I found this forum in my quest for more info regarding my symptons and while waiting for neuro appts.
It started 4 years ago when I injured my right foot - 3 ortho's told me I had torn tendons and that without surgery it would not get better - severe foot drop. Finally the 4th opinion said they thought it was a neuro problem since my left leg is now weak and I have balance issues and walking issues - my legs feel like lead weights! So now I am waiting for new MRI's to be done and just trying to hang on to my sanity since I hate not being able to do anything for myself! Also have Thyroid issues so between neuro appts, MRI's and The endocronologist all I do is go to Drs! And I am never sick - haven't had so much as a cold in over 7 years - So that's my story - and I am thankful I found you all! It is a godsend to have others out there who deal with this every day like I do - cause unless you are going thru it you may say you understand but you really don't!
Hi there: have been having issues with l'hermittes (which was also triggering veritgo and facial numbness), headaches, leg spasms and weakness, weird burnt skin feeling, and fatigue. MRI of brain came back clean but LP showed elevated tcells. Under watch of Neuro but nothing definitive. All she said is that I don't have MS now, but that that doesn't mean I won't have it in the future.
I think that about sums it up :)
I have been having problems for over 2 years now. I have had MRIs, lots of blood work, thyroid function, gallbladder, CT, Lumbar Puncture. Nothing showing on these tests. I continue to have problems but I do not have a definitive diagnosis & have not had a good experience with the 3 neurologists I have been to. Some of my symptoms are continuous and some come & go. Just last week I went for a vng test & do not yet have full results but was told I have inner ear nerve damage.
These are the symptoms I have had for the long term. Vertigo, fatigue, weak arms, right eye bulging, shaky vision, blurry, floaters seen in lights, right ear spasm (fluttering) feedback w/loud noises, tongue fascillation, constant jaw tremor/teeth chattering, right throat feels swollen, right facial numbness, tip of tongue points slightly to the right, right corner of mouth slightly drooped, right hand diminished feeling, pinkie gets hot when other fingers cold, tingling sensation, right foot plantar fasciitis, ibs, uh, anal charlie horses.... I'm sure there are others but that's what I can think of right now.
This has been very frustrating because when you look at me you can't tell I have all of this going on unless I complain about it but I choose not to because when I do people say the wrong things & my feelings get hurt. This has made me feel very closed off from the world. I don't know anyone else going through things like this & sometimes people around me (including my doctors) make me feel like I'm crazy. I want so badly to get better so I can go back to my old self. This has effected my kids, husband, work, my friends & feeling of well being.
Has anyone had similar symptoms & a diagnosis or advise for me? I am hopeful that I will find the right doctor who listens and puts it all together. Until then I will be patient & live my life the best I can.
Sorry for the long post but I had to get this out.
I posted a question about my last two MRI's. I have not been diagnosed yet. My doctor is sending me to Brigham and Women's in Boston. She said my case is not black and white.
I started having problems in 2007 after I had my appendix out. Started with word finding problems. Doctor said it was a sign of stroke during surgery but was confused because he thought it went well. CT scan revealed a small stroke in the right basal ganglia and something in the robins virchow space. I've switched neurologists 5 times. It seems like all they keep me going for is MRI after MRI but no diagnosis. So this last doctor has been great. In July a small plaque showed up on the right parietal region. MRI in October shows some other new things. Lesion in the left basal ganglia and corpus callosum. My body hurts all over. Arms, legs. Sharp stabbing pains in feet and legs. I would just love an answer.
Thanks for listening.
Amazing how many people are in the same boat. I'm 42, living in Germany, married with one son (who has Asperger syndrome) and I have been having weird neurological thingies since I was 26...
1996: admitted to hospital with dizziness, visual disturbances and the constant feeling of being pulled over to the right. Tests indicated "inflammatory disease of the central nervous system", cortisone infusions given, but lumbar puncture later came back clear. Symptoms abated in about 4-6 weeks.
1999: same again. Tests, MRI, lumbar puncture normal except for slight deviation in EEG (right half of my brain too slow or something - no comment *lol*) Symptoms abated in about 3-4 weeks.
2000: and again. Neurological tests again ok and I am diagnosed with conversion disorder. Symptoms abate within a couple of months.
2003: Another relapse, this time with terrible weakness and feeling of paralysis in my legs. Due to my previous diagnosis of conversion disorder, I am admitted to a psychiatric clinic without further neurological testing. Symptoms abate within 2 months.
After that, things were more or less ok for 8 years until about a month ago, when the whole business flared up again totally unexpectedly, just like last time but now also with tingling in my right arm and leg and the right side of my face. I spent another week in hospital and was diagnosed with vestibular neuropathy in the right ear. An MRI scan of my head also found "isolated periventricular lesions" in the right side of my brain plus "hyperactive patellar tendon reflexes". I still need to go for another lumbar puncture, but I can't help thinking that this is looking more and more like MS.
How I wish diagnosing neurological disorders was as easy as diagnosing a broken bone....
Hi I lived in Germany for 3 years in Munster. Loved it there.
Anyway something you wrote reminded me of myself. You said "s and the constant feeling of being pulled over to the right..........
Me too. One of my first symptoms after I went blind and was finally told I had optical neuritis (about 7 years after the event), was when I went into work, I would lean towards the right and along the wall was a row of filing cabinets, and every MORNING, I would fall into them lol. I was blue on my right arm.
IF you were then told you had an inflammatory disease going on how can they then give you a diagnosis of CD....thats ridiculous.
CD is a throw away diagnosis. The way I read CD is the patient has a long history of surgical illnesses, and over time develops CD which shows up in strange disorders which have no clinical causes.
JUST because your lumbur puncture is clear does not mean you dont have MS.
IF you look at the top of our forum there are useful links, and one of them explains very well about having a CLEAR LUMBUR PUNCTURE but still having MS ok.
IF you had CD I dont expect you would have such long periods of quiet times when your disease is in remission.
I had a lumbur puncture which my neuro told me was high in O BANDS which is what they would want to see for MS, BUT unfortunately for me my blood test taken at the same time showed inflammation, so this one blood test made my LP NEGATIVE for MS. The fact the inflammation could just be a coincidence has nothing to do with it. AND the point is if my blood is full of INFLAMMATION then why is it...........
Dont be fobbed off something inflammatory is obviously going on with you.
Have you had an MRI of the full spine? That is where they should be looking not in your brain.
LP is too invasive and doesnt necessarily tell you that you have MS but can tell you that you dont have other diseases that would show up in the serum.
NEUROLOGICAL DISORDERS SHOULD not be so hard to diagnose.
The problem is there are too many neuros who all do it their way.
I think at the time of an appointment the patient should fill in a question sheet of everything that has gone on, and when it started and if there was any outside factors that could have triggered it.
I know one guy who told me before his started he had an accident in his car. I mentioned to him Chiari malformation. He had been told he was a time waster basically. Anyway he did the research and took this new research to a new care provider in the states and BINGO guess what it was....yes CM.
You might end up with MS, but it doesnt read CD to me. No way. I have met people with CD and they really do have it there is a different way they portray themselves.
I believe I have MS. My GP thinks I do, and but for one blood test i would be an official MS forum user lol.
BUT even without the label I dont care anymore, because at 60 for me there is nothing i can take that would heal me. I just live for each day, and enjoy the good times with my family, i stay as stress free as I can, and i live a healthy diet. I even started to follow the MS RECOVERY DIET, and some of my symptoms have actually got easier to cope with.
Big hugs and try to have a great xmas with your family. Mariax
*whoops I thought I had responded here, guess not :) ignore my other post.
Hi there, my name is Stacie. I have a husband and 2 boys. I have been a part of the MS community for quite sometime, trying to find answers. I am a limbolander, so glad to find this community. I have had symptoms of MS for a long time. My frist symptom was vertigo and it started in 2007. I fell twice down the stairs during this time. It's as if my foot didn't know where to go or how to move right. Since, I've had symptoms of tingling, numbness, heaviness, stiffening of my left leg. I've had horrible pain behind my right eye with blurry vision and dark spots, the right sdie of my face has gone numb, tongue numb, I have muscle weakness, and extreme fatigue. Just recently have been losing my balance a lot and after my last bout of numbness in my left leg, the left arm went numb and spread to my chest/trunk. It's been quite an ordeal, but unfortunately no answers. MRI of brain and cervical spine have come back negative for lesions and my recent LP was normal. I feel like I'm going crazy sometimes, living with these symptoms and no answers. I'm sure all of you feel the same way or similar. I look forward to getting to know you all more and how you are coping and/or taking action on behalf of your health.
Hey everyone. What brings me here is this..thing. I have trouble describing it since it doesnt make logical sense, even to me. But all physical sensation causes pain, and only pain. It always has, since my earliest memories. This includes my own touch. There are parts, like my stomach, where my own gentle touch will cause me to contract in reflex, pretty extremely. Or like my arm, which feels likes im being scratched hard. Its like everythings made of sharp glass.
Upon realizing that i will never be able to experience pleasurable physical contact of any sort, I think I collapsed a bit inside.
I dont think ive ever actually seen someone else with this problem... which kinda bothers me a lot.
Hello and welcome to the forum. This is a great place to find support! Everyone here is wonderful!
I have felt what you are describing a few times in the past. From what it sounds like, you are describing nerve pain. This may sound really simple, but have you ever been screened for fibromyalgia? I was recently diagnosed with this as well, and what it basically is is overactive nerves, which sounds a little like you describe.
From what I have learned, people with fibro are more prone to other autoimmune diseases, as well. Have you ever been tested for any of the other autoimmune or neurological diseases?
If you feel comfortable, start a new thread by clicking on the add a post button and tell us a little more. Some of the others here may not see this post, as it is at the end of a really long thread. I, myself, don't always see the posts on this thread.
Hang in there and hope to hear from you soon!
I am so glad to have found this group. Limbo-land is a tough place to be!
I have had some odd things going on for awhile now, but I have a horrible job where I am on call 24/7 literally, so I have been attributing most of the strange symptoms to sleep deprivation. I have worked as a railroad freight conductor for the last 7 years and the hours are insane! I get a call telling me that I have 2 hours to report to work, and I have no way of knowing if I will be there for 6 hours or 15 hours. Fortunately, the FRA has started fining the railroads if they keep you for more than 12 hours so that doesn't happen often anymore. My waking hours can flip flop from day to night every other day so I pretty much live in a constant state of jet lag.
Starting in August, shortly after I got some sort of insect bite which caused me to have huge hives over most of my body, things got decidedly worse. At first my main issues were extreme fatigue, concentration issues and coordination issues. The hives were long lasting and I took two 10 day courses of Prednisone for the hives followed by 2 months of Allegra allergy medication, which is also a steroid. By October, the hives had finally gone away so I quit the steroid use.
One night while being stuck in a train traffic jam for a few hours,and more tired than usual, I took a cat nap and when I woke up, I could only see out of one eye; it was like the other one had a patch over it or something! It only lasted a few minutes, thankfully, but it was very scary and I reacted strongly enough that the two guys I was working with noticed something was wrong. Later that shift, I had to walk about 500 ft. on the loose rock along the track, I honestly looked like I was drunk or something! I kept turning my ankles when a rock would shift unexpectedly and could not walk in a straight line. On my walk back, I was able to concentrate, look carefully at the terrain, and use a tool used to set brakes on the cars like a walking stick, and I thought I walked like a sober person. However, I made enough of a spectacle of myself that I had to take a random drug test and am still off work until I can prove "fitness for duty". I have a hard time trying to assert that I am fit for duty, when I am well aware of how dangerous my job is. A loss of balance, or even slow reactions could easily get me killed. However, if I don't return to work, my whole family will be without health insurance. My husband is self employed and both he and my youngest daughter are 'un-insurable'. Even though I don't yet have a diagnoses, I probably am now, too.
I have had a couple of appointments with a neurologist who has done a great job getting my husband's seizure disorder well controlled. In talking with him about my medical history I discovered that I have had some suspicious symptoms that go back all the way to '04 including the complete loss of sight in my right eye after first waking up. I have also had slurred speech and periodic clumsiness that are greatly affected by my level of fatigue and a complete intolerance to heat. I had visible swelling and inflammation of my right eye during the exam and after doing the eye movement tests, etc, it was very painful for a couple of weeks. Turning my eye to the side felt like I was being stabbed in the eye. I have also had a very hard time dealing with chaotic noise for the last few years. Modern movies with their imposing sound tracks drive me out of the living room. My family chose a sports bar for lunch last year and the multiple TV's going at once was too much for me. I had to leave before our food came. It is truly irritating, but it also actually makes my ears hurt. Strange.
The loss of vision thing happened two more times between my initial appt. and my MRI. The last time I was able to turn a light off and on repeatedly and confirm my suspicions that it is basically caused by my pupil being 'stuck' in a pinpoint position and unable to dilate for night vision. I could see okay with the light on, but when I shut it off I couldn't see a thing. I am a semi-professional photographer and it reminds me of a defective camera lens. It doesn't last more than a few minutes which apparently is not MS like, but my vision during this worst bout was blurry for over a month and I normally have 20/15 vision and I had a lot of trouble with suddenly forgetting words that I normally use. Another new issue during this time was being easily upset. I don't know how to describe it really but for example while driving to work, I was passing a semi-truck on a bridge on the interstate when he blew a tire. The tread came flying out from under his trailer right at me. I couldn't swerve as I was on a bridge, but as it is rural Wyoming, there was no traffic behind me so I was able to slam on the brakes and slow down enough that it hit my bumper and undercarriage as opposed to my windshield. I pulled over to see what damage was done and called my husband shaking and almost crying and he had to walk me through inspecting my car and calm me down enough to drive. Thanks to great skid plates there was no damage, but freaking out like that IS NOT ME! I have raced cars and boats and had plenty of near misses, but I have never gotten that upset! Even in the midst of it, I knew I was overreacting for ME.
I have also been to see my PA two times in the last few years thinking I was just starting to get a bladder infection, but no sign of infection was found either time. I have noticed this more than once but felt foolish enough that I elected to wait and see and it would eventually go away on it's own.
The neuro ordered an MRI w/ contrast of my brain and that came back normal. I am supposed to go back in Feb. for another MRI but he never said anything about an MRI of my spine. He decided not to do a lumbar puncture until after seeing what my next MRI looks like.
After doing some research into what else this could be, I am concerned that no one tested me for Lyme's disease or something similar. There are no known cases in Wyoming but there are over 100 other tick borne pathogens and I have seen 3 different doctors since my unknown insect bite and subsequent hives and no one thought that was worth checking out. Also, I had Mono in '02 at 34 years old and have been prone to frequent unexplained low grade fevers ever since.
If anyone has any suggestions I would be most appreciative of your input! It sounds like a lot of you have been stuck in limbo-land for a very long time and done a lot of research.
Wow you have been through the mill havent you. I take it you also have health problems with your husband and daughter?
Just looking quickly at your post did you ever have a VER/VEP test done for Optical Neuritis? I had this shutter going down on the vision when i was on holiday in Brazil. It happened again when i got home. eventually i did have a VEP test and it was found i did have optical neuritis at the time, which can be onset of MS or even other auto immune diseases. Your eye symptoms sound classic for ON even way back in 2004.
As to insect bites in Wyoming I found this straight away lol:
I noticed that Tularemia can affect the eyes.
Hives is an allergic reaction to the bite so if you have already an auto immune problem going on being bitten by something could have been one of the straws that broke the camels back if you get my drift. Just one more thing for your system to fight and if you have compromised immune system already it could have resulted in the hives reaction.
My goodness your job. I thought they got rid of slavery years ago. Your hours of work are intolerable for anyone to cope with. Its ridiculous. Especially when working in such a dangerous job. It would never be allowed in the UK...there would be an uprising lol.
Epstein Barr (mono) has been linked with MS, and many other auto immune diseases. So the chances are your vist by this virus could have easily woken up something that was just laying there waiting......
I would certainly persue Lymes and any other zoonotic disease that could be triggered by an insect bite.
Also i would have thought a VEP/VER would have been essential to see if you did have optical neuritis......
I will look around and do some more research.
I cant get over your job lol......its no wonder you have something going on.
Welcome Valkyrie568 to our little community here.
Could you copy and paste your post with a title
(part of your question could be the title) as a regular new post.
It will be much easier for members to access and read,
as this is a very long thread and your post, easy to miss!
I will post my reply later.
It sounds like you and your family have really been through a lot, too. I read your page. It is awful that you are still in limbo after this many years and some very severe issues! Neurology has a long way to go before they can even begin to give anyone definitive answers. I am pessimistic with having a husband with "unexplained seizures" for over 30 years and a dad with "atypical Parkinsons"for 20 years! Your pain issues would make quality of life very difficult to manage. I am having some of that also. I sure hope that doesn't continue to get worse!
Thank you so much for your suggestions. I hadn't found anything as specific as far as other insect bite complications. I called the Dept. of Health this morning and they said that there was one possible case of Tularemia in our area this past summer. They are supposed to call me back with more specific information and testing recommendations later today.
I agree that my job is very close to slavery. I have said many times that I feel like an indentured servant, stuck in this horrible situation for the health insurance! We are the only 1st world country that runs their freight railroads in such a ridiculous fashion. I am very envious of the health care arrangements in the UK (and your wonderfully cool summers!). My husband and daughter don't really have severe medical issues. My daughter had a severe allergic reaction to a dental anesthetic which caused her heart to stop three times, but she does not have a heart problem and thankfully not even any damage resultant from that incident, but American health Insurance companies will use any excuse to refuse to insure people. My husband has had around 10 grand mal seizures over the last 33 years. They are unexplained, but well controlled, but again, the only way for him to have health insurance is under forced coverage, group insurance, not available to self employed people and not even through many company insurance plans. I would definitely move to another country for the health insurance issue alone, but I suspect that isn't an option with preexisting health conditions. When I read about CD and think about my own stress issues, health insurance and my resultant job from hell are at the top of my list! Yeah... I am definitely stressed, but CD doesn't seem to fit.
I have not had a VEP/VER. I'm not sure why, but I think I am somewhat grateful at this point. As of today, it looks like the only way I am going to be able to go back to work is to allow my company full access to my medical records. I don't want to do that on the principal of the thing. I don't really have anything to hide, but that seems like a major invasion of privacy. I think I am going to do it because there is currently a 'reserve board' position I could take for 20% pay, but full benefits. I would only have to take one "training trip" per week (at 2 am though) so I really wouldn't have to do anything but ride the train. Since at this point, I don't feel that I have an alternative but to let them look at my medical records I am at least grateful that there won't be very much information for them to snoop around in. I am just hoping that they won't put me off until my 2nd MRI in Feb. My neuro has testified against my railroad in several lawsuits and may have suspected this and that is why he waited til after the first of the year for more tests. And maybe that explains why they won't accept his letter saying that my symptoms have abated and I am safe to return to work. If I quit on a disability, they have to cover my health insurance for the current calender year +2 more, and my dependents for the current year +1. I suspect that once I get back into the sleep deprivation mode, my symptoms may come back.
I am a newbie and found this group thanks to the suggestion of another person who has a daughter with M.S. I had posted my symptoms in another type of forum (coupons) and a very sweet lady gave me the info on this group. Reading your posts is like deja vous...Lets see I am 51, Live in Oklahoma, I have 7 children all grown except for my 5 year old twins which I adopted after fostering from the age of 4 days...I have 13 grandchildren and up until May of last year I operated a daycare home, I had to give that up because quite frankly I couldn't physically do it any more! I am a very BIG lady to top things off, not 400 lbs but not 300 either, I dieted a week ago and never cheated and gained 2 lbs, what a blow. My journey with pain began years ago, 1991 with horrible migraines, they would last up to 5 days and I would have 2 -3 episodes a month. in 1998 I had an attack in my left leg in which I had horrible pain and numbness, I couldn't walk, just putting my foot on the floor was horrible but to poke the thing I couldn't feel it..after several days of this I went to the ER and was told I had sciatica, I accepted that and contributed the bi-monthly attacks as something to live with....in the last two years I have begun to loose my strength. I am proud of the fact that I am a strong woman and can do anything from putting down carpet to working on my car if necessary, I even plumbed my house!! Now I cannot lift laundry! My son who is mentally handicapped lives on my property and he does all the manual labor for me! If I try to walk or stand for more than 10 minutes the pain in my leg and my joints brings tears, they get hot, hurt horribly and go numb..I have been waking up with my fingers all distorted and they seem locked almost backwards. I slur my speech some and seem to be biting my cheeks and sometimes my tongue in my sleep. I forget everything and sometimes can't remember who is who until I stop and think a minute. I am afraid to go anywhere on my own and now I have these little mini panic attacks where I feel everything almost spin when I have to get out. I have also noticed everything tastes weird. I did have a strain of weird tick fever 2 years ago and I feel that some of this is the fault of that but my doctor is state assigned and he could care less. I had a CAT scan (non dye) of my back and they said nothing was there, now they say I have neuropathy not sciatica....the left side of my face droops some too and they tested for Bells Palsey and said it was not that either. To top it off I was hospitalized in Nov. for 4 days with a blood clot and now I take blood thinners (Warafrin) which kicks my butt as well. I also have high blood pressure. So there is my story, any ideas? What can I do with a doctor that could care less and just breaks out the pad..I was supposed to take Neurontin but I had a psych reaction to Regland once and was afraid I'd want to off myself, I am alone most of the time with the twins who also have disabilities due to their "egg donors" drug usage. I welcome any comments because I am at a loss and I have to survive to raise these two!
Welcome to our friendly and supportive community here.
I would recommend you copy and paste your post,
make part of your question the title of a new post and start fresh,
as this thread is too long and you may find that your post gets
less visibility from being buried at the bottom.
I will respond to your post in a couple days.
Hi - I remember you from the MS Forum where I spent a lot of time, having spinal tap, MRIs etc. yielding no answers. I've learned a lot since then. I am one of the many, many people with Lyme disease. Most are not diagnosed timely, if at all. That is because of the fixation on diagnostics for disease-diagnosing in this country. Truth is, Lyme diagnostics are highly inaccurate, missing potentially over half the people tested who really may have Lyme disease. And Lyme is as serious a disease as MS or cancer - it just isn't recognized as such because of widespread active suppression of Lyme in this country. Mrs. Aristotle, Lyme often involves excruciating pain. I suggest everyone here go to the ILADS website (International Lyme Disease) and view Leslie Wermer's video there (she died of Lyme) at http://www.ilads.org/lyme_disease/lyme_videos_9.html
Also, look at the home page at ilads.org and see what ILADS (a team of MDs) says about Lyme - how there need not be a "bull's eye rash" and you need never find a tick on yourself to have Lyme. They also mention the inaccuracy of Lyme tests. So what do you do? If your persistent neurologic symptoms have gone undiagnosed despite numerous tests, I suggest consulting a "Lyme-literate doctor." Note, I did NOT suggest seeing an infectious disease doctor, but a "Lyme-literate" doctor. To find one, contact ILADS or your local Lyme support group. Lyme is a disabler and a killer that can mimick MS, ALS and other diseases. Lyme diagnosis must be a "clinical diagnosis" based on your symptoms and history (NOT on diagnostics!). For years I was blown off by infectious disease doctors and told I had a false-positive Lyme test. The time I lost in dealing with the havoc that Lyme disease and its coinfections were wreaking inside my body due to nondiagnosis will likely result in permanent disability and premature death. Don't lose time. Find a "Lyme-literate" doctor now for evaluation. You may get your answer and start to feel better with treatment.
I did have a lymes test after asking for one and was told it was negative.
The reason why i did that was because of my fishing. My husband and I often went fishing on the lakes, which were also shared with many a sheep, which of course carry ticks.
I know that when you sit on the river bank for hours anything can bite us and we might not even notice.
I have been thinking about going to the Breakspeare medical centre near London who specialise in Lyme and other diseases. I have ummed and ahhed about it for too long really.
All I know is my illness is getting worse now and I am becoming more disabled.
IF I had Lymes I would not be in the least bit surprised.
Thank you so much for your post perhaps I need spurring on to do something now.
I am glad you got an answer. So many of these diseases well there are just no specialists really for them because they are all so new diseases really....the more we mix in where deer and sheep etc roam the more chance we have of getting something.
Hello to all. I'm new to this board and looking for any thoughts on what I have going on right now. Little background...I'm female, 31 years old, mom of 5 year old twins, married for 8 years and am in overall good general health:)
The fact that I even found any lesions is crazy. The test was looking for a pituitary tumor given my very high prolactin levels (whole other issue). No tumor but there were spots in the distance...a full MRI with and w/o contrast was ordered. I didn't even make it out of the hospital parking lot when I slid that CD of the MRI into my laptop. Holy Christmas tree! It really did look like white Christmas lights scattered all over my brain. Literally dozens throughout the periventricular and subcortical white matter of both hemispheres. There was a big one in there too.. 2.1 x 1.2 x 1 cm in size. Nothing else abnormal to be found but my lesion load was scary enough.
My PCP sent me to a neurologist who did the usual neuro tests, reviewed my scans and basically said it looks like MS so lets just go for it and have the LP done to confirm...no beating around the bush or putting your through other tests. I liked that attitude and I went for it
About 2 weeks later I landed in the ER with very odd feeling in my right hand...pins and needles of a sort. Nothing more but the next morning my left hand had a Novocain type feeling. I could feel things, pick small things up but odd! Over the next two hours the cold Novocain feeling moved up my are, to my neck, up into my face, and across my left chest and back...but only the left side. I felt like I could draw a perfect line down the center of my body to show where the feeling stopped. Then at the ER they were taking my BP and the cuff made my arm feel like it was on FIRE. I even asked the nurse to check it, she did and even had me feel it. It was room temperature...not even warm...what the heck?!?!?! Nothing else was off with blood work. So what the heck was that?
On the 20th of October I got the LP...passed out. 2 days later needed a blood patch...passed out. I'm no sissy either so this was a little surprising to me. NEGATIVE...the LP came back negative for bands. My protein was within normal range but on the high end of normal. Nothing really to report other then that.
Neuro is still leaning toward MS and was willing to start me on DMDs giving the clinically isolated issue that landed me in the ER and that my MRI shows some "typical" lesions found in MS and the fact that just about everything else on the planet has been ruled out. But I wanted to wait and do another MRI to have more proof. He was okay with it.
Also, about a month before all this testing for MS started happening I went to the PCP with a bout of vertigo. Lasted about a day and a half is all...I just chalked it up to sinus issues or something. Now I wonder if this is related to a possible diagnosis.
I had a VEP and AEP test done about a month ago and a follow-up comparison MRI done about 2 weeks ago. It seems pretty clear to me that I have new lesions based on the CD but I have so many lesions it can be hard to tell. I have my follow-up appointment on this Saturday (February 11th, 2012) Ugh...I'm a wreck waiting. I just want an answer!
I have been on the MS forum for some time and someone mentioned the "limboland" forum! I'm so happy to find you all!
Welcome to our group.
You will find much needed support here, along with- hopefully- some
useful information, based on members' experiences and knowledge.
May I suggest that you copy and paste your post and re-post it
as new question -your choice of title- as you will probably get more visibility and more replies.
Take care and I'll also reply to it soon.
You have a beautiful family! Nice photo!
I honestly if it was me would start the treatment especially with a new lesion showing.
May I ask please do not shoot me but I am an honest person and say it how I see it, are you hanging back because you are in denial? I kind of feel bad about writing that but......I just get a feeling.....
You know what i mean..xxxx I really would take the treatment for now and see how it makes you feel like i said it cant make it worse can it, and if you are active it can slow it all down.
Hi, I'm new here. And just getting settled into limboland as well. It looks like I'm going to be here awhile though since none of my doctors know what to do with me.
Back in October when my only symptom was severe diplopia and some squeezing around my chest I had an MRI and an EMG on the arm, both of which were fine.
A month later though, instead of it going away as they told me it would likely do, I started having other symptoms (eye pain, lost vision in one eye and then had sustained loss of color vision, my legs were shaking so bad I was falling down when I tried to stand up, tingling fingers on left hand and in big toes, muscle twitching). My neurologist brushed everything off as stress at first, but when another doc (internist) gave me prednisone to help me get some strength back and maybe stop shaking, my double vision started clearing up. Everyone kept saying it was impossible, but my neurologist decided then that I had ocular myasthenia and now it was just all the other symptoms to be impossible. She's pushing me to have a full trans-sternum thymectomy. (yikes!) I have to say that she did all of the tests for myasthenia and ALL of them came back negative and add to that the fact that the meds for it caused only problems with no benefit whatsoever. All of the other doctors I've seen think that she's insanely rash and way off base on the myasthenia/thymectomy idea.
Around the end of November I started having weird electical-feeling shocks running down one of my legs to the knee (my new doc has identified them as L'hermittes) and the squeezing around the chest got worse. My left hand was slow and had limited sensation (mostly just to burn and tingle) for about 3 weeks in January, but now it's almost back to normal. Just those original fingers to keep on tingling a bit at the tips. My old neuro kept telling me it was because I was right handed. (!?) I'm still on Prednisone (going on 3 months now) and my diplopia is still gone, but my eyes still occasionally hurt.
At the end of January, when my symptoms seemed like they were as cleared up as they were going to be but still not gone, I went to see a new eye doctor about the eye pain. He said I had had optic neuritis and referred me to a new neurologist. The new neuro won't tell me specifically what he suspects without doing more tests (and repeating some of the old ones), but had me admitted to the hospital to have them done right away. He would just say the he was quite sure that I had an inflammation to the CNS. I saw a piece of my file that I wasn't supposed to see and it said right across the top "Probable MS". He did another MRI, this time including the spine, but all without contrast. He ordered a lumbar puncture but after 4 tries without success I told them I'd had enough so I'll never know on that one.
He also ordered a new VEP and a VESS which I did Friday. The VEP was coming out with similar results to one that I had already done at my own request at my hometown hospital. My old neuro said they were normal, but the doc/tech who did the tests Friday said they didn't understand why the old tests were marked normal and that they would have to investigate a bit before doing the interpretation.
At the moment, I feel pretty good, but the fact that I'm not quite back to normal makes me wonder. The eye pain also makes me worry that ON (if that's what it was) will come back.
We'll see! Anyway, this is the short version of my story (luckily ;-) ) and I'm looking forward to chatting with you and hearing more of your stories.
Well you have been through the mill haven't you. These diseases are just so hard to diagnose it drives me nuts.
With the ON it could turn out to be MS. Perhaps you had a clinically isolated syndrome and will not get sick again.
The problem with the tests is that they dont always show up lesions, and even a negative LP does not mean someone does not have MS. I was talking to someone only this morning who has just been diagnosed with MS with a NEGATIVE LP.
I hope it isnt MS and I hope it is just an isolated incidence for you.
Its hard being in limboland I know i have worn the T shirt for nearly 6 years lol.
I was already in the severely disabled category, per Voca,tional Rehab looking over my Ortho's files, etc. after having been run over by an SUV on my bike, 6 yrs. Ago.
I have recently (2 1/2 mos. ago) been told, after an m.r.i. an cat scan that I had a lesion on my brain. This was after having prior intermitant walking troubles for 9 years (dx'd as 'not orthopaedic') along with weakness and stamina concerns.
What landed me in the hospital for 5 days when I found out I had the lesion was a very bad flare:
After being in bed for most of the day for 3 1/2 mos. (my status had changed from hand tremors dx- essential tremor-- to, on occasion, 'wildly erratic', almost seizure-like jerky arm movements gthat, it seemed, landed me in bed-- an accompanying debilitating exhaustion.
When my status progressed to added symptoms of memory loss, body going 'back and forth' (tardive dyskinesia concerns), knees collapsing, 'head going back and forth', and my prior 'partial paralysis' (?)/ VERY slow, almost immovable legs/walking concerns, I went to the e.r..
I had lost my job... no insurance... so I tried the e.r. It helped to get an m.r.i.
Although I do grope to get through each week, getting 1-2 hours worth of ANYTHING AT ALL done per day, I intendd to get an attorney to help me with ss.i., followed by medi-caid.
Also, I have halting speech (trying to remember my next word), and brain fog-- maybe presenting as confusion and 'can't think through complex tasks'.
Thinking tasks that I used to do well are better for me, more successful, yet thinking tasks that used to be challenging are now MOUNTAINOUS to try to tack le. Only getting one task done per day is uNacceptable.
For help/assistance, which is what I need in oder to progress in any kind of a reasonable time frame, I summize I would need a nurse's aide. Hence, I'm wallowing in a mire here.
Strexss, maybe, or having too big a week, trying to work under pressure of a time factor... if I add a five hour project to my week... I.ve ended up with the 'head back and forth', eyes 'batting/blinking real fast' (nastygmus?), legs not wanting to walk, knees collapsing, hand wanting to shake symptoms.
These symptoms occurred twice in the past two days. I'm not sure if going to the wmergency room or lying and resting for a good while will be my next step.
Some of these symptoms, per the internet searches I do while resting for hours on end, say 'ivf not treated soon, can b permanent.
Oh, and my 'nurse daughter', who lives out of town is STRANGELY unsupportive. Two siblings think I'm making it upor exagerating, or something.
Oh, headaches, which I NEVER had before now are auite regular. In fact, they come on prior to my worst excacerbations.
The neuro. In the hospital said she has never seen my kind of movment disorder and said to go to specialty hospital, in Miami, a good distance away.
My other child, I have been shielding from all this, as she needed to have the 'eye of the tiger', being in the navy, in a danger zone, doing highly dangerous work, for almost a year.
Their Dad, my ex, has had tumoultuously disabling status for many years. I kind of am having to 'go it alone'. He has priority, health-wise, you could say.
I spoke, yesterday, with my nurse daughter, mentioning my lesion, upon running by her my severe excacerbation symptoms. She doesnt believe me-- saying the hospital would not tell me I have a lesion on my brain, then just let me go home. (They kept me under watch, for 5 days).
Thanks for being there, you all. Sorry to be so verbose, but its been an eventful time, here, all the while moving, handling, home, car, room-mate stuff, daughter serving in the middle east (HER status is too stressful for me, really). But, like the military says about post traumatic stress disorder-- handling your health 'takes a different kind of courage'.
By the way, I'm a 52 year old female. Oh, insomnia has been a great concern, for about a year, now... mualthough it had been a problem before.
I'm curious about past over-use of pesticides, or ammonia when cleaning/over-use.
I've had my share of traumatic events, both recently, and in years past. Maybe 'fight-or-flight' responses wear down one's immune system stuff/neurological system.
I'd like to make a joke about not being able to remember where I parked my car in the parking lot, ALL THE TIME. But I may come across, well as being a little too 'kooky', as it is.
I do appreciate this forum, though. :) Blessings, both large and small, to all.
Hello and welcome! I am sorry I didn't see this sooner, I tend to overlook this thread of posts sometimes.
I am sooo glad that you found us. It sounds like you have a lot on your plate! There are many here who have been through similar situations with similar symptoms, each having their own stories to tell and each having their own experiences in this journey.
Have you had any other tests at all besides the MRI/CAT scans? Has anyone (doctors) said anything in regards to what they are thinking you may have? Have you had any blood work at all looking for things like low vitamin D, low vitamin B12, or elevated ANA, etc? These are all things that should be done to begin to eliminate diseases as you progress along this journey.
I know you said that you have no insurance right now, that must be really hard when you are trying to sort through all this medical business! I have insurance (although it's not very good) and I have a tremendous amount of medical bills every month/year. How far along are you in your disability/ssi case?
Again, welcome! You will find yourself in good company here! Please feel free to start posts, ask questions, give advice, etc. whenever you want.
Looking forward to hearing from you soon!
Sorry you're going through all of this... I think you're on the right path with working on getting medicaid or some kind of health insurance. The sooner you can get started on figuring out what's going on the sooner you will hopefully get some answers.
From a fellow newbie to the forum, welcome! It does seem like a great place to ask questions, share advice and experiences, etc.
Hi everyone, new to the forum.
Reading some of your stories here am just in tears. I knew i wasn't alone having previously found a forum on another site with people mentioning problems like mine, but looking here, well...some posts i could've written myself, it's like seeing my own symptom stories.
Well, i'm Emma, am 29 and single mum to 2 children. I live in the UK.
Looking back, i recall having symptoms in my teens, but back then i suppose they didn't seem so important? I don't know?
This is going to be an essay of a post so will try to keep it fairly brief.
Age 14, fall during ice skating twice in a week resulted in complex pain syndrome, i believe now it's called complex regional pain syndrome. It was in my knees, right worse. It eased by about age 17 and only bothered me occasionally since til recently when it decided to pop back for visit which was a nasty one.
I remember having a non stop twitching eye when i was 17/18, it lasted maybe a fortnight. Also i recall many nerves twitching all over the place but at the time i didn't know it could be the start of a health problem.
I had my son when i was almost 20 by c section. Soon after i got pains in my right big toe, then the side of the toe went numb. Weirdly, despite it being numb, it still gets the sharp pains sometimes! Odd huh!
I had my daughter almost 3 years later natural birth. When she was maybe a year/18 months i got the eye twitching back, constant for maybe 10 weeks or more? Also around this time i started getting pins and needles in both legs almost immediately on bending. Also i started getting a tight skin feeling and chill on my shins, left worse as i remember. I had physio, saw a neuro and had an mri of the brain and ct of the spine, apprently fine.
My left shoulder blade im sure i can remember having an altered sensation as far back as when i'd just had my son. In sept last yr i think it was, tingling started. About a month ago this turned into full blown pins and needles.
About 4 years ago i started getting occasional tingles in my arms and hands. I had a weird right foot with pins and needles at the same time. My dr took no notice. I kept going back and was told i had anxiety. I didn't, but the symptoms were leading that way.
The foot thing happened again months after. The hand tingles continued.
I have had many weird feelings of bruises, burns, scratches etc but there is absolutely nothing there. I still often have this on the top of my hands.
About 2 years ago tingles started in my face as well as in my mouth, my tongue, lips, throat and sometimes i was sure i could feel it in my chest. Apparently this meant i was nuts. My dr said stress and anxiety, no-one gets tingles in the face i was told.
Repeated visits to the gp got me some blood tests which i was told were normal. I started getting tightness and tingles in left side just under the breast and ribs. I had an xray and was told since my back was fine it was stress. I still have this almost daily.
In sept 2010 i was admitted to hospital for gallbladder area pain. Blood tests showed my calcium was low. I was told to see my gp so i did. Indeed that and my vit d were low. This led to a dx of hypoparathyroidism. I had to wait a further 7 months til i saw an endocrinologist before i got that diagnosis though. That was may last yr. Despite my calcium being corrected and within good normal range, i continued to have sensory issues and pain. The neuro i got referred to said it was still the cal causing it. I wasnt convinced. I saw him again, my levels were still fine, and he said my neuro exam was also fine except my big toe and shin.
He didnt even seem bothered i'd been having tingles in my groin.
I started getting weird chills, like as if standing in front of the fridge with the door open, mainly on my back, front and legs. Its been all over though. I cant find an explanation.
After having 'migraine aura' for the first few times, i had a brain scan, which neuro did after some massive **** ups by the hospital. It was meant to be with contrast but wasnt. I was told it was fine, but without the contrast, how am i to know.
Prior to this too, i had what they called 'tension headache' in the back of my head and sides. I've since learnt this could've been a type of migraine. I do not believe it was tension as i wasn't stressed when it started, and not even deep relaxation shifted it. Sometimes my head had a cold water feeling in it too...you should've seen the drs face when i told him that! I could just imagine his facebook status that night 'had some crazy woman in surgery today'!
I started getting like mobile phone buzzing, on and off with seconds between, mainly in my thighs but sometimes elsewhere. Other weird feelings started like creeping, insects etc. I'm sure you all know the type.
I started getting saddle paraesthesia more. A lumbar scan for this was negative. I'm starting acupuncture next week for this with my hosp physio. She seems a lot more optimistic than i am.
In oct last year, i started feeling this weird ache, kind of viral but not quite the same? Maybe a bit like extreme fatigue from severely overdoing the gym? Even in my head though? I'd had earache some time and drs said there was nothing to see there. Then i got dizzy, almost fell into shelves in the supermarket and got marched to the gps to be diagnosed with vertigo. Very bad timing with a uni exam that week and the tablets for it making me drowsey!
I'd had a gland which was enlarged for years and this started hurting again making me think it was viral. The others started getting much bigger and hurting too. The ent chap said he didnt think i had vertigo, tested for different things and my bloodwork showed pos for epstein barr with IGg levels. So, he said i've had it but not so recently, but it may explain my big glands. Okies. By the way, i was sent to him for the glands and a sore throat for 5 months.
Well, absolutely fed up and feeling rotten and my poor other half probably sick of me moaning about ignorant drs, feeling poorly, having pains, came with me to my endocrinology appointment, which i have 3 monthly now. I'd done my research and knew i probably had autoimmune hypoparathyroidism as i didn't 'fit' the other illnesses to cause it. So, my fiance had to practically beg this dr for further testing. He's done crp, ana, and a few others. He was so reluctant to do any! I get the results in a fortnight. My crp wasnt raised on the tests with the ent.
I dont know if i have been tested for things such as lyme and lupus so i'm going to ask for these next time if i haven't had them already.
My symptom list is about 70 long. I havent included them all here but some others that may or may not be relevent are:
prickles/tingles/weird creeping sensation anywhere on body. Today lots of it in the groin and bottom which is worrying.
Burning pain/nerve pain in bum, upper leg, groin and inside thigh-piriformis? My physio thinks if so only slightly.
Outside of my feet feel odd, like numb, and when i walk the feeling spreads across the sole.
Pains in hands and arms, shooting pains and aches.
Jaw pain across cheek and teeth, no dental probs.
Upper back pain.
Random pains for no reason anywhere.
Stabbing pains in chest, sometimes just one, and sometimes they last all day.
Endometriosis for approx 15 yrs.
Underarm pain!? No glands felt.
Vibrations under skin and sometimes feel deeper.
Vibrations and tingles on nose
Felling wobbly, and jelly legs?
I won't go on, this is too long already. I don't know what to do next.
I so understand what people are saying here and totally understand their frustration. It's scary, and it's so hard to get a diagnosis.
I hope everyone is having a good and symptom free day!
Apologies for the long post!
This is such a long thread that posts here frequently get overlooked so you might want to repost this on a new thread so you will get more responses.
It sounds like you have a lot going on and have had for awhile. I hope you will be able to get some symptom relief and answers eventually. There are some very knowledgeable people on this forum with some good ideas.
Thanks for your message. I read your posts last night, what a time you've had of it! I do hope you are seeing some improvements!
I'm so stunned how so many people on here have similar situations and still just do not know what's wrong with them. It's shocking how much get's put down to stress and depression too. My drs kept saying stress and anxiety were causing my facial and hand/arm tingles and pains, and if i had listened to them, i'd be even more sick now with my hypo pth. However, now the pth and calcium issue is known, it's a red herring for everything else as far as the drs are concerned! Everything gets blamed on the cal til proved otherwise! Although i know stress can cause an array of problems.
Even though it makes me feel sad that so many other people are going through such similar problems, it's nice to know i'm not so alone and there are others who understand.
Hello and welcome! I'm sorry I didn't see this sooner, I tend to over-look this thread for some reason, lol!
I'm sorry you are going through all this! What a rollercoaster ride you've had. Some of your symptoms sound neurological in nature and some don't. Neurological disease ARE really hard to diagnose, as there are soooo many mimics; MS, lyme's, sjorgens, fibro, lupus, many vitamin deficiencies (vit D, vit B12), etc, etc.
Many times, a neuro wants to watch you over time to document changes in your symptoms, test results, and physical exam/neuro exam results. Also, many neurological disease are diagnosed by exclusion. This means that, while you may have symptoms or test results indicative of a certain disease, you must be tested for many other diseases first and have those ruled out before your neuro or doctor will make a definative diagnosis.
One other problem that seems to happen to those in limbo is that we get impatient with no progress with our neuros/docs and we seek out another opinion. In my opinion, this is no fault of the patient, though. The neuros/docs don't communicate with the patient that they need to watch them over time to "prove" their case. At least this is kinda what happened with me. I was not patient enough with the neuro who ended up diagnosing me, but at the same time, he did not communicate to me what he was thinking.
Anyhoo, welcome again! This place is awesome and I love it here! So many wonderful people! Some come and go, others have been here for awhile. I just received my diagnosis about 2 months ago now but I stay here because I feel this is my home, lol.
Thanks for your reply. Oh if only these neuro conditions were easier to figure out hey? I am hoping for lupus and lyme testing at my next endo appointment. Thats next monday so we shall see what happens. My endo is a little erm, how can i put it? He's nice enough if you are straightforward haha. If like me, you're a rare case, then he gets a little agitated if you ask for things or if you have questions he does not know the answers for. Unfortunately, i knew more about my condition than he did so it was slightly awkward last time i saw him when i was asking for testing.
My neuro, i see again in May...i agree they like to just evaluate symptoms over a long time...and in the meantime give a dx of 'undiagnosed neurological condition' haha.
can i be nosey and ask what you were diagnosed with? Maria kindly sent me a link yesterday which had symptoms of some illnesses which i absolutely fit the symptoms of (athought i have a few extras lol). Im going to speak to my gp about these.
I was first diagnosed with fibro and about a month later with MS. So I have both fibro and MS. I knew I had MS, but after hearing that I had it, I went into denial mode. I am doing much better now and actually feeling really good. I think we finally found the right combo of meds for me.
The two doctors who diagnosed me, one my old neuro and one my fibro doctor, both think I have PPMS which means I most likely won't be on any DMD's. They are both hopeful for the new drug BG12 and are willing to let me try that when it gets approval. They wanted me to try LDN, however because I have a lot of pain and do take some pain meds, it would not be compatable, as LDN competes with the receptor sites of the pain meds.
I was going to seek out a second opinion yet again from another MS specialist, but I have that on hold right now. I am FLAT broke from all these medical bills and am only working part-time most weeks. So this is part of the reason why I am waiting. Another reason is that my 2 docs think I should wait a little bit yet. For what, I don't know but I will be getting a referral as soon as I can afford it.
My symptoms started out with pain/burning in my legs, mostly my right one. I then developed trigeminal neuralgia. Later I developed foot drop. I have also had swallowing problems, the "hug", lots of dizziness, muscle spasms/spacticity, and flashes of light in my eyes. Oh, and cognitive stuff. I have problems with word finding and I forget stuff alot!
Anyhoo, take care and let us know how your appts go. Feel free to start a new thread, as some people don't look at this thread because it's soooo long.
Hi I am new to this site, I have been suffering with what seems to be POTS or some form of dysautonomia, for about three and half years now. It started with a fainting episode while I was driving, thankfully my mother was with me and I was able to pull over to the side of the road, but ended up being hauled to the hospital by ambulance and their diagnosis was a one time incident..... NOT ( LOL) So after suffering for about 6 months without getting better I went to my GP and he referred me to a neurologist, cardiologist, etc... lots of tests including the tilt table test which was not conclusive. I have avoided going back to the doc for anything other than bloodwork for my thyroid becuase I feel like they really arent too concerned... I am not fainting in front of them, I am still fairly functional... I hold down my full time job still, but my job takes so much out of me that I can barely function at home.. Lots of days I can barely make it thru work...
.So I decided a few days ago to start researching my condition again and see if there was any new info out there that might be helpful. I would really like to find a neuerologist that has some experience or would at least research what my issues are so I could maybe come up with a diagnosis... they tested me for MS 13 years ago and wanted me to go that route again... I was hesitant three years ago, but now I guess I would be willing to submit myself to the tests to see if that is what is causing my issues... I am trying to work up enough nerve to make an appt with my gp and talk to him about my issues and symptoms... any ideas?? my hubby is really supportive, but I get upset and frustrated talking to the doctor, and I hate when they think everything is related to anxiety... when its not. I have been doing everything preventative to deal with the POTS to better my quality of life but its getting worse and I need to try some other options I guess...
I know Doctors always want to put things down to anxiety or stress, but I have not been on medicine for either yet... I do have a little anxiety once in a while but not much...
I have the weird chills, fainting or near fainting, extreme fatigue brought on by being on my feet or sitting too long, gastro intestinal issues, visual disturbances, dizziness, weakness, cant be out in the heat, chest pains...
have to be really careful what I eat. I have reactions or sensitivities to foods that I never had before.
I have been at my job for 10 years now, and I sit mostly, LOL Thank Goodness, cuz if I had to be on my feet I would be fainting on a regular basis.
I have been just toughing out the symptoms as much as possible, I am not financially in a place where I can stay home. I do know that my job adds to my stress some, but its mostly managed, by the end of my work week though I am exhausted... fridays are usually home in bed days.
I dont drive myself much, and not at all if I feel like I might be having issues. Thank you for telling me about your brother. I was wondering about the beta blockers! My cardiologist wasnt very helpful, I got the impression he was more interested in performing heart surgery than helping me manage my miniscule symptoms...(LOL)
I am thankful that I dont have anything more serious going on, but I really would like to be healthier.
When I was young I was a cross country runner and very athletic, now just daily exercise takes a lot out of me. I have been really taking good care of myself and make sure I eat salt and drink lots of water and take potassium since I had the episode 3 years ago , my body doesnt retain either.
I am glad also that there is so much more information about dysautonomia available!!
I bit the bullet so to speak yesterday and made an appointment with a new neurologist for the end of April! I am excited and hopeful that maybe I will get some answers, and maybe some new options to try!
If you dont mind me asking what did they operate on you for that the doctors thought was stress and anxiety??
Another newbie here, I'm 49 and female. Just beginning my journey through limboland, and I'm reading a lot of stuff here that already sounds familiar. Sigh. It just amazes me that after all these years, "stress and anxiety" (aka it's-all-in-your-head disease or perhaps "your state of mind is causing your symptoms" disease) is still such a popular diagnosis. SO many pathological diseases and syndromes have been discovered that were in the past put down to S&A, and still, if it's not in the book, it doesn't exist. After removal of one ovary I went to my gyn because my periods hadn't started up and I was having menopausal symptoms. He did a pelvic exam and said that the tissues there were pale, which was "proof" of low estrogen levels. Proof? Like just because you aren't Witnessing my hot flashes, you don't believe that I have them? Grr.
The limboland I'm currently inhabiting has to do with major pain in my upper back, shoulder and arm, with extremely intense tingling in my arm and hand. To me, this is obviously nerve-related, but my preliminary doctor visit was marked with a prescription for a muscle relaxant, and a shoulder xray. Which showed nothing - why am I not surprised, this pain is originating in my spine and radiating outward. Earth to doctor, can you hear me??? the good old S&A was trotted out as a possible cause, but this is NOT a matter of tense muscles, I have no particular S&A and actually told a friend the other day that, pain aside, i was spilling over with happiness. Life is GOOD, and peaceful, except for this stupid PAIN.
Well anyway, here I am in the limboland forum, awaiting results of a cervical xray, starting a course of steroids and a nerve pain med which is doing squat so far. Lol ... almost literally doing squat, it did give me a good case of the runs.
Thanks for listening to me rant, I'm going exploring now.
Glad you found us and sorry you're going through these issues! You're among friends here and most of us have been through a similar run-around about S&A being the cause of our problems. My first neuro sent me to a psychiatrist who gave me the best advice of all: to get a new doctor! :)
Wishing you well and hope to hear how things go...
I am new here. Like you, bisbonian, I had surgery on my left ovary for a cyst the size of a medium orange. About a year after that I started having pain on my left side of the abdomen, had all the tests (2 pap tests, 2 CTs, an ultrasound and a MRI), all came normal. Doctor finally scheduled a scope to look around. Turned out she couldn't use the scope because I was so messed up. She had to open me up and it took over 3 hours to fix everything that was wrong. Left ovary was diseased and on the right side of the body, the uterus was completely twisted around a few times, there was a pool of blood on the left side, and the bladder was pushed down. The doctor even needed to call in help to the OR, she couldn't do everything herself.
Well, here's my new problem which is why I'm joining everyone else in neurological limbo. I've had myoclonic jerks before bed ever since I was little, I'm now 39, they were never diagnosed though. Back in January of this year, I had a severe headache followed by a flu-like virus for about three days. During then the myoclonic jerks came during the day and they have never left. My whole body jerks at any time, some more powerful than others plus I have pain in my left shoulder and left side of the neck. I had all the blood tests and a MRI of the brain and neck plus an EEG. All came back normal, except that I had very high level of copper in the blood but my neurologist said not to worry about that since my urine copper level was normal.
So like everyone else here I was told it was mental, possibly tics. I was put on Klonopin which I couldn't afford so I was put on the cheaper Xanax and told to go for physical therapy to learn how to control the jerks and to go for mental therapy.
Any suggestions? I really think I have pinched nerve somewhere with the shoulder and neck pain but my neurologist has given up. I hate jerking all the time, I can't even cook, try frying something and then jerking, having grease splash everywhere, but my neurologist just doesn't care and my PCP agrees with his diagnosis. I do suffer depression for which I take Cymbalta but I have not been any more anxious than any time before and I never had this during the day.
Hi and welcome! I'm fairly new here as well. :) Sorry you've been through so much and with doctors who aren't helping. My doctors sent me through the mental route too and I took it to prove them wrong. The psych that they sent me to decided on the first appointment that I needed new medical doctors and even wrote me some referrals to get me started in the right direction. With the psych saying that my problems weren't due to any psychological reason, my doctors - out of professional courtesy, if nothing else - had to respect his opinion and were forced to dig deeper. You may just find a friend in talking to a psychiatrist - especially since your PCP isn't helping.
Aside from that, have you thought about getting a second opinion from another neurologist? You have the right to a second opinion and your PCP should be willing to write a referral for one, even if he agrees with the first diagnosis.
Hang in there! Limboland s*cks, but we're all here together and happy to support each other and that helps.
Hello. I just joined the forum. I am pretty much out of Limboland now, but I wish I had found this forum when I was in it!
I was deteriorating rapidly with fatigue, brain fog, headaches, unexplained air hunger and shortness of breath (lungs are fine, no asthma), tingling, twitching, light sensitivity, reduced vision, floaters, tinnitus, sound sensitivity, and cognitive problems. An MRI showed about 20 scattered small lesions in my white matter, all unenhanced.
Tests for MS, sarcoid, cancer, and other neurological possibilities were coming up negative and my neuro was stumped. I came across Lyme Disease in my research and my neuro tested my CSF and my blood, but both were negative.
I also developed sore and then painful ribs, stomach pain, IBS-like symptoms, loss of appetite, loss of sense of taste, weight loss, gallbladder and liver pain, kidney/adrenal pain, loss of libido, hand tremor, high BP, and elevated heart rate with palpitations up to 155 bpm. Having so many non-MS symptoms convinced me it wasn't MS.
I ended up in the hospital with severe abdominal pain where they insisted I didn't have Lyme, but they had no idea what was wrong. They discharged me with a Vicodin Rx and told me to go to a nearby research hospital. Since it would take 2 months to get in and I felt like I was dying, I went out of network to an LLMD, a Lyme Literate Medical Doctor. I got tested at IGeneX, where they found Lyme specific antibodies in my blood. I was diagnosed by my LLMD and began treatment with long term antibiotics. I am steadily getting better, but I have a long way to go.
I just had a follow up MRI and I am hoping that some of my lesions have shrunk or healed. In some cases, the lesions are permanent, but I am hoping some of them heal.
I have learned a lot about the body during my research, especially neurological issues as well as GI issues. I went 16 months from the onset of chronic symptoms and 6 years total with Lyme and a coinfection called Bartonella before I was diagnosed. I hope my experience can help others in their journey through Limboland.
Hello and welcome to the forum! I'm really glad your here! Maybe you can stick around and give some advice to others going through similar situations regarding Lyme's.
We see many people come and go through this forum seeking a diagnosis of some kind. I think that like your case, Lyme's is WAY underdiagnosed. We have another forum member here who is very knowledgeable about Lyme's and other coinfections. He could maybe shed some light for you as to why it took so long for them to find your Lyme's.
I am really glad for you that you finally have the answers to what is ailing you and that you are on your way to recovery. Please stick around and share what you can/will. We can always use more forum members who are knowledgeable about other neuro diseases other than MS.
Thanks for the welcome! I, too, believe it is wwaaaaayyyy under diagnosed. Doctors are remarkably unaware of the myriad of symptoms and many go undiagnosed for years. I had it for 6 years before my diagnosis.
I will hang around to see if anybody posts who might have Lyme.
Hello Everyone! I've been posting in the MS forum since April 13th. I am also in limbo land at this time. I have had a few symptoms here and there in the past 5 years but never thought anything of it and didn't want to complain to the doctor in fear of sounding like a was a hypochondriac. Then in the end of March and beginning of April,
I began having ocular migraines. I didn't know what they were and kept having them and freaked out. Went to prompt care and they thought it could be detached retina. They sent me to an eye specialist. The eye doctor said my eyes looked healthy. He kept stressing that I need to see my regular doctor right away. I finally did and she asked if I have had balance issues or dizzy at all. I said yes. She ordered an MRI. Went to a Neuro and she said I have extensive hyperintense periventricular white matter lesions on my brain. She said it could be MS.
I have a Lumbar Puncture scheduled on May 15th. I also have to do a bunch of blood work.
I never considered this possibility. Didn't know much about MS at all. I'm really scared and have been dealing with this scare for a few weeks now.
I'm glad you've found us. Sounds like you've got a lot going on, but also that your doctors are taking good care of you so far.
MS is scary, but I've found that it gets less scary the more I know about it. It can be really hard for some people and not very bad at all for others, but every case is different from the next one. There are also quite a few medication options available these days to help slow progression down.
Either way, you've found a great place to share support and talk with others who've already been down the road we're going down now. Welcome and if there is anything you want to ask or share, feel free.
I too am in Limbo possible MS.
I have seen/read several of your post's over on MS forum. You seem to be a very caring and optimistic person. That is what we all need!
Here in Limbo it is hard but just know that we're all here for each other and will lift up one another in prayer and we also have several from MS forum that comment and encourage us during our journey of waiting to where it may be the good Lord is sending us. It's sort of like were in Limbo as a way of being prepared for what is to come with our dx.
Some don't have as long of a wait as others. But while we wait we have this forum of family and friends to help us along the way.
I thank God for this forum and MS forum for all their prayers,support and well given advice.
So, WELCOME again and I pray you will get answers soon.:)
Awww. Thank you Laura and Tammy! You are both very sweet and thank you for the warm welcome and the prayers. I didn't realize there was this limbo forum and I'm thrilled to find it.
I just had my physical today and found out that my BP is 140 systolic. It normally is 120 or lower. Doctor took it sitting and standing. It dropped 20 when standing. It was 120. She's making me come back in a month to check that. ugh. Just another health thing to worry about! I'm tired of health issues! Oh well. Could be worse.
Hi, it's AnotherInvisible. I lost my password and for some reason, the email they send when you ask them to let you reset wasn't working. Oh, well. Now I'm Another_Invisible.
I haven't been on since I've been diagnosed, but for some reason was browsing the other night. I think I might have some info. that would be useful to a couple of Limbolanders, so I've hopped on for a bit.
I'm a 34-yr-old single mum. I fell ill 3 years and one day ago. I still have no diagnosis.
I just discovered this group tonight. I read through several of the previous posts, and it seems this is where I belong.
My symptoms began very suddenly, 6 days after I moved to Arizona. I was walking to the car to clean it out and suddenly felt very dizzy and faint, with a strange feeling in my chest, as though I were wearing a vest that kept tightening itself. I sat down in the car for a while, and then made myself get up and get back inside the apartment. Once back indoors, my symptoms persisted, and my heart rate was jumping up to 140bpm while I was lying down, and then, after 20 minutes or so, it would crash down to about 50bpm. My level of consciousness dropped so badly that I could barely speak complete sentences.
I went to the emergency room that night and they couldn't find anything wrong with me, noting only that my heart rate was low. They sent me home.
I was so weak and dizzy and confused that I could barely sit up to eat. I couldn't think straight or speak at a normal pace and without slurring and stammering. Noises were piercing and would send a feeling of electric shock from the base of my skull to my chest. Vertigo set in, along with the dizziness/faintness. My lips and nose area, my arms, legs, fingers, pelvic floor area, and abdomen were tingly like they had fallen asleep... this usually came in sickening waves, about 3 seconds apart. I became intolerant to any medication, caffeine, nicotine, and alcohol (anything that worked on the CNS or changed my blood pressure). My metabolism dropped to completely nothing... I gained 30 pounds in three weeks, making me the heaviest I'd been in my life, aside from pregnancy.
I spent months like that, barely able to leave my bed, and going to the emergency room when my heart rate would get too high or when I was barely able to maintain consciousness. Each time, they sent me home, only noting that my heart rate and blood pressure were low.
11 months later, I began to get red blotches in my eyes from burst blood vessels, and it felt like there was lots of pressure in my eyes. They felt like they were bulging. I got a migraine and was in so much pain that I had to take something for it, despite the intolerance to meds. I cut an ibuprofen in half and took it, and fell asleep about an hour later. When I woke, I noticed that my vision was blurry. I thought it was just blurry from the cat allergy or sleeping with my arm over my eyes or something, and that it would correct itself as the day went on. It didn't, and I realised that my eye wasn't actually blurry... I was experiencing double vision, in just one eye, so I was seeing three images, slightly askew from one another.
I saw my doctor the next day and he sent me to an opthalmologist. My eyes were perfectly healthy.
Several emergency room visits later, my doctor finally got me in to see a cardiologist. They did a tilt-table test, a 48-hr Holter monitor, and echocardiogram. Everything came back normal except that I am hypovolemic and that my heart rate drops as low as 38 beats/minute.
I had a Lyme's titer, thyroid tests, endocrine tests, etc. No signs of infection, hormone imbalance, organ dysfunction, etc.
As far as any test went, I was perfectly healthy.
In the meantime, my vision grew worse, and I have double vision in my left eye. About a year ago, the right eye began to get a little blurry, as well... so I see two clear images superimposed over a third, blurry one.
The heart rate, blood pressure, vertigo, and dizziness issues continued, along with the impaired mental functioning and loss of memory.
I am always ill with these things, but they become especially bad if I try to walk anywhere or do even the lightest of housework. Sometimes, I will have an episode of these exacerbated symptoms for no apparent reason, but it's usually brought on by trying to take care of my apartment by vacuuming or tidying up. When I have these "episodes", they last anywhere from several hours to 6 months.
After 3 years and a day, I am no closer to discovering what's wrong with me than I was the day it suddenly began. I cannot work, I cannot take care of my own apartment. My teenage son handles the shopping and laundry and pays the bills, because I physically cannot.
My metabolism is still nearly dead, and I have not been able to take off the 30 extra pounds (because I can't exercise). My maintenance weight intake is now 600-700 calories/day. If I eat any more than that, I pack on weight. I don't dare eat less than that, to take off the extra weight, even though it would make for less work in just moving around, and trigger the illness less.
I currently have no more testing lined up, and no more appointments lined up. I'm fairly certain that my doctors just don't care about whether I get treatment or not.
After 3 years of being unable to work and being unwilling to ask for help, I am finally applying for SSI. I no longer have any faith that this will get sorted.
Welcome to Limbo but hopefully you will get answers in the near future so you don't have to be here long.
It seems as if there is alot going on and you definitely need to see a Neurologist and at that point MRI's can be done etc.
We have so many wonderful members on this forum. Mrs.Aristotle started this and is great source of info along with so many others. They will be along soon to welcome you and offer good advice.
Here in limbo we all try to encourage,pray and help one another.
It is a blessing to have others to go along this journey with. Some are here longer than others but:) we have some that have been dx'd that visit and offer great encouragement and advice.:)
So, Welcome again and please do not lose faith and hope. There is a light at the end of this dark tunnel.
I'll be lifting you in prayer each day. Please let us know more of any test you may have had and please get your GP to refer you to neurologist ASAP!
Thank you. Nice to meet you.
I saw a neurologist in December of last year. My brain MRI was normal aside from some sinus issues (I had a sinus infection at the time). That led to neurology passing me off to an ENT, who tested my balance crystals in my inner ear, because of the vertigo. Those tests were also normal.
I've been fairly healthy up til 7 - 8 mo. ago, can't seem to get an MRI or find a Doctor that will do some deep investigating. I'm frustrated but trying to stay positive. My symptoms are starting to get real bad. I am on neurotin and it has helped slightly but symptoms are getting more intense so I don't know what to do. Thanks
i second mrsaristotle's theory that what you are experiencing may be sjogren's syndrome. if you can get a referral to a rheumatologist, that would be your first step in either confirming or ruling it out. there are specific markers they can test for, as well as possibly doing a lip biopsy to help with the diagnostic process.
i hope you feel better very soon. we all know how it is.
I'm pleased to find this forum and hope that it can be helpful to me and I can be helpful to you all as well!
Just a little bit about my story: In Feb 2012, I went from working full time to being so ill that I could barely get out of bed, and would be totally exhausted with just trying to take 5-6 steps to get to the bathroom. Primary Care Doc did all kinds of tests and blood work, but other than an elevated SED rate (indicative of infection somewhere in my body), nothing could really be found. All the big ones were tested for: Lymes (2x), Diabetes, Myocarditis (infection in the heart muscle).... but all tests, except for the ongoing elevated SED rate, came back normal. In spite of normal results, I got weaker and weaker, and eventually lost the ability to walk w/o assistance- due to pain, tingling, "fire" in my feet and balance/gait problems.
March 17-22 I was hospitalized as Primary Care Doc thought maybe I had Guillian-Barre Syndrome, a peripheral nervous system disorder, but that has since been ruled out.
Since then I have been being seen by my PC Doc monthly as well as am being seen no longer by a local neurologist, but by a neurologist at a well- known teaching hospital. Long story "short"..... still no diagnosis, tho symptoms persist (but 3 mos of PT have gotten me back on my feet again w a support cane), new symptoms appear and testing continues to be done. I am having my 2nd MRI tomorrow both w and w/o contrast.
Neuro Doc has ruled out all peripheral nervous system disorders and says it definitely appears to be central nervous system related... (ugh). He is seriously looking at MS from this next MRI and will compare it to the one I got in the hosp back in March. I have a brain EEG scheduled for the end of the month, which Neuro ordered to check me for epilepsy, petit mal, I guess-though I've never had a seizure iin my life to my knowledge- and don't understand how that would cause all the other symptoms I've been dealing with.
From symptoms and research I've done (I also work in a hospital, tho am not a nurse/doctor, but have access to all kinds of med research) my husband and I would not be surprised at all if it does turn out to be MS.
However, this "mystery" illness is taking forever to get a dx for, which is why I'm glad to find this forum. Most of my friends can't understand my situation and (tho they'd never say it) I think they are sick of hearing about it, seeing me not better and struggling. It has caused some isolation, no, a lot of isolation for me! Again, another reason I'm happy to find you all!!
Ok... enough for now. I'm happy to answer (most) any questions anyone might have, and appreciate any support I can receive or give. My family and I continue to wait, pray and hope for a dx, and some possible treatment... but even we are coming to our whits' ends with all this!
Thank for taking the time to read and for being here!! AmyKate73
Today, the neurology department called me and said that my MRI was "unremarkable"- so that's good.... But the "mystery that is me" continues.
Next, my neurologist wants (and I do too!) me to see a neuro-ophthalmologist at his hospital because of my vision issues that have been here since Feb, and seem to be manifesting new symptoms- but I don't know when appt will be scheduled.
If nothing "remarkable" is discovered from the neuro eye exam, then I get another spinal tap. And at the end of this month I still have a brain EEG that is already scheduled.
So Neurology doc is still looking, but finding no reason for me to be feeling as poorly as I am or to be having the problems I am.
As glad I am that the brain MRI was "unremarkable", I'm also struggling as it again prolongs the unknown. So, I have very mixed emotions today.... I'm glad, but am also frustrated at another test with nothing "helpful" (please understand I'm grateful there wasn't something awful) and frustrated at the continuation of the "mystery that is me" and having to schedule more tests.
I just (like most everyone here, probably) want to feel better and get my life back! Sorry.... it's been a rough day..... :(
Wow, I can't believe so many people can't get a firm yeh or nay for this disease. I'll try to keep my story short. I was dx w/Crohns in March 2012(moms side of the family). I'm 47. While on Prednisone my hands intermittently burned and and finger tips went numb(I know, weird it happened while on Pred). Anyways, came off and have had a bag of weirdness since. Still have intermittent burning hands and tingling and buzzing feet. Twitching all over. Mild balance issues and major, major bladder issues. Actually, that's the worst one. I also have (4) 2nd cousins with MS. Had brain and cervical MRI all normal. Have herniated discs. Got the cortisone shots. Helped my stiff neck, but not my hands. Urologist can't find anything so far and my neurologist just reordered my MRI for my brain and cervical for next Fri. Had lots and lots of tests especially for vitamin deficiency's. My Crohns is mild luckily. Well thanks for letting me vent. I think friends and husband are starting to think I am a nut bag.
I didn't see this thread for some reason the other night when I found this forum so I wrote a post called a quick hello and prayer for all. That night when I found this forum I felt sort of relieved to find people going through not being dxs just like me. Mables3 I know what you mean about family. Although mine don't think I am nuts, they just don't know how to act or cope with me feeling the way I do. This forum is a godsend.
Now, everyone don't get me wrong my husband is an amazing man, but sometimes he just doesn't know what to do since we don't know what's wrong with me. For the past four yrs my health has been a mystery. Tingling sensations in legs, arms, and face. Dizzy spells to the point where I need help to get around, and pain. Just some of my sxs that come and go and effect my life when they please. But I am back in a health program and ready to start on the journey to answers agian. I will be praying you all get answers soon too.
I haven't been here on this forum in a while, but I thought I would respond to your post and suggest Lyme Disease. When a Lyme Disease patient is given steroids, they generally get significantly worse. I developed all kinds of new symptoms for 3-4 months straight after only a prednisone shot (which put me in the ER for worsened symptoms) and then four days of oral pred, after which I felt horrible.
I have also read stories of Lyme infections reactivating or worsening Crohn's and IBS. (I had IBS-like symptoms with my Lyme and a Bartonella coinfection.)
A huge problem is that up to half of Lyme patients test false negative. Doctors were taught that a negative means you don't have it, but that is not true. The CDC surveillance criteria was developed to track a narrow definition of Lyme Disease as seen in New England (sore knees and a bulls eye rash). It was designed to produce a minimum of false positives, without regard to how many false negatives it produced. I don't know how it came to be a diagnostic absolute, but in reality, a negative result does not exclude Lyme at all.
You will want to find a LLMD, a Lyme Literate Medical Doctor, as we patients call them. You can find one through your local Lyme support group, your state's Lyme Disease Association, or at ILADS.org. You will also want to get tested at IGeneX, a specialty lab that finds more cases than other labs.
There is also a test called a CD57. It is an immune cell only suppressed by HIV and Lyme. Most people with Lyme for a year or more will have a low count.
You can Google "Tom Grier Lyme" and look for his articles explaining testing and why it is such a problem. You need a LLMD because they know how to make a clinical diagnosis based on symptoms and history, with testing as a support, not as a decider. Also a LLMD will treat you until you are well, and not just for the 2-4 weeks that the IDSA says is always successful.
You can also check out the symptom list in this document. It is written for doctors, but I found it really helpful.
AmyKate - please read my post above to Mables3. While you may have MS, you may also have Lyme that is mimicking MS as mine did. Some doctors who treat a lot of Lyme have theorized that when Lyme is mimicking MS, there is usually a second infection present called Bartonella. (True for me.)
I encourage you to also find a LLMD and get tested at IGeneX. I did both and I truly believe it saved my life after I had been through a dozen doctors, 2 ER visits and a hospitalization. An important clue for Lyme is that you feel so horrible. MS patients don't usually feel so horrible at disease onset. However, a late stage Lyme infection with neuro symptoms usually makes the sufferer feel horrible.
Ricobord, I have heard Lyme disease can get worse with steroids. I need to see my PCP and will bring it up to her and maybe get tested for that.
The very first day I took my 40 mg of Prednisone, my hands started burning, wrist and elbows hurt and finger tips went numb. It has gotten better since I've been off but stayed that way the whole time I was on prednisone(2 1/2 months). My GI told me people get weird stuff on prednisone, but when I came off of it, the hand prickling stayed and then my bladder and feet started bugging me.
I don't mention the problem starting with prednisone to doctors anymore because they look at me like a crackpot. Prednisone is used for MS and most auto immune diseases, so they find it strange it would happen when I went on it. That's an evil drug and I had eye issues, headaches, anxiety, face pain and skin rashes. I had a bag of weirdness while on it and some it has remained. I have not been the same since.
I have to admit, I don't feel horrible(except for my bladder nagging me all day). I am not tired my joints don't really hurt, so that is why I have not pushed for the Lyme test. My friends daughter does have it and she tires easily and has lots of joint pain. I will research it a little more though.
I'm hoping to wake up one day and all will be gone. Thank you for the information.
I have an undiagnosed or misdiagnosed condition, for the last 6 years. I am looking for anyone with similar experiences, input, or ideas.
2006 Small left pulmonary embolism treated with coumiden, followed 10 days later by a massive pulmonary embolism with an INR of 4.0. Subsequently I was put on Lovenox due to coumiden failure. Later that year I suffered a miscarriage.
2008 Pregnancy resulting in IUGR baby healthy but born at 3lbs. 15 oz due to placenta clotting between 8th-9th month.
2011 Switched from Lovenox to Pradaxa due to loss of insurance.
Aug 2012 "shower of mini clots to brain" put back on Lovenox.
I was initially diagnosed with Antiphospholipid Antibody Syndrome because of 2 positive Lupus Anticoagulant tests done right after my pulmonary embolisms. That diagnosis has been disputed because many subsequent tests for that have been negative. However, I do have elevated levels of the following from testing done this month.
Factor VIII level was 326% ref range below 150%
Von Willebrand Factor was 295% ref range below 150%
Von Willebrand Activity was 448% ref range below 170%
I have also had a consistently elevated WBC for 6 years ranging from 12,000-20,000 and has gone as high as 40,000 with lung infections.
My Kappa/Lambda ratio in urine was also found to be elevated within the last year. Initially started out as just the ratio, then subsequent testing showed Kappa was elevated as well. It is NOT found in my serum.
Kappa/Lambada ratio 16.84 ref rang 2.04-10.37
Kappa 79.00 ref rang 1.35-24.19
I have a history of recurring severe lung/sinus infections since childhood. I had decreased levels of IgG which resulted in a diagnosis of hypogammaglobulinanemia. That has since been disputed and many doctors now believe it was steroid induced. I also have a history of gastroparesis which comes and goes, and high blood pressure.
My symptoms include Livedo, headaches, vision issues, transient TIA episodes, severe muscle spasms that come and go, musle myalgia's, severe fatigue, discoid plaque like skin lesions (typically confined to lower legs, although have had on upper thighs, breast, and arms), and pain in my hip joints.
I have had 3 bone marrow biopsies, a kidney biopsy, and 3 skin biopsy. My last bone marrow biopsy showed a slight increase in plasma cells 7%, but not enough to diagnose mutiple myeloma. I have been tested for just about every autoimmune disease out there I think. I was scheduled for a VATS lung biopsy because my last CT showed tree-in-bud opacities, but had my mini strokes the week before so it was put on hold. My hematologist has brought up sarcoidosis, but other than that, he has no idea.
I think my worst fear is going through yet another biopsy only to be told "I don't know". The only other disorder I can find that seems to fit is Sneddon's syndrome, but I have not had much look with doctor's here being willing to consider something rare or outside their comfort zone. My hematologist said he had never even heard of it, although he was willing to research it. I am still waiting to hear back.
So any input, info, similar experience, or ideas I would love to hear them. I am ready to get off the medical mystery merri go round.
I don't have any advice or wisdom to share with you. I can say that I'm terribly sorry to hear of all that you've been through and that you're still without answers. Reading your story, it does sound as if your doctors have eliminated a number of things even if that hasn't so far brought them any answers. I do hope that the answer is not long in coming.
Have you been to a specialist hospital such as johns hopkins or the mayo clinic? The National Health Institute in Washington DC is often interested in solving unsolved medical mysteries. Would it be within acceptable travel distance to give them a call and go to see them?
I'll be thinking of you and hoping that you get answers soon.
Thank you, Laura. I did go to Mayo, at the time I had been diagnosed with hypogammaglobulinanemia, and had been on high doses of prednisone for a long period. I saw several specialist, but it was difficult to discern what symptoms I was really having vs. what was steriod induced. In the end, they decided the hypogammaglobuinanemia was steriod induced, provided a better tapering schedule, and sent me out the door. The only other issue they addressed was knee pain-apparently I have avascular necrosis in my right knee, again due to prednisone. So, I stil don't know what is causing my blood clotting levels to be so high, nor what has caused my other symptoms. I may go back to someplace like Mayo if I don't get any where in the next couple months.
Came across this site several weeks ago when my husband was diagnosed with Hereditary Hemochromatosis...HHC for short. This was another kick to the gut as a couple years ago he was diagnosed with Hep C, and at the same time as he was told about the HHC he was told the Hep C is genotype 1a. So, not to be dramatic at all, he has the two most unfavorable diseases that affect the liver, the HHC is genetic and has been storing iron from birth which first goes to liver and heart, and on top of that about 30 years ago they feel based on his medical history, he contracted Hep C, which of course, after such a long period of time is deadly to the liver. So he has Stage 2 periportal fibrosis, gallbladder disease, pancreatic nodules, polyps on colon, joint and muscle pain that leaves him immobilized almost...all from HHC and Hep C. He was found to have the heterozygous mutations C282Y and H63D combination in the HFE gene that controls the amount of iron your body stores. This is phenominally underdiagnosed COMMON genetic disorder and early detection is the KEY, as treatment for it prevents the progression and subsequent damage brought on from iron storage. A person can ALSO be anemic and iron load at the SAME TIME!!! The blood tests are simple, they are NOT part of routine blood tests doc orders, and so it is being missed. Docs are uninformed and have been educated on how to look for certain criteria, and those are so wrong, those criteria/symptoms/presentations they are taught to look for are all END STAGE issues.
If you or anyone you know are being told they have fibromyalgia, osteo arthritis...get this checked out. These arthritic symptoms are first to show up in patients, as is chronic fatigue.
If you have been diagnosed with Hashimoto's or hypothyroidism, or have symptoms of thyroid problems but your tests come out "normal" (TSH level)...get checked for HHC. Iron loads on the pituitary gland.
If you or anyone has been struggling with heart palpitations, enlarged heart, congestive heart failure, or other unexplained heart issues...get checked for HHC. Iron loads on heart second after liver.
If you have diabetes...get checked for HHC. Iron loads on pancreas and causes diabetes.
If you have been told you have cirrhosis of the liver or liver damage, get checked for HHC...even if you do not drink or only occasionally. Docs tell people they are closet alcoholics because of liver damage OR elevated liver enzymes, that cannot be explained by anything else including lifestyle, this is a red flag and should be investigated further for iron overload.
If you have chronic or increased mental fog and confusion, or "dymentia" type symptoms, get checked for iron loading. Iron loads on the brain and causes memory loss, confusion and brain fog.
If you have what docs tell you is IBS, or colitis or other digestive issues, get checked for iron overload. Excess iron is absorbed by the intestine after being released as a free radical, and excess iron transporting through body oxidizes on organs, in joints, and in tissues. The two most common joint replacements are hips in people with HHC.
Your levels should be (optimal...lab reference values will have their version of normal)
Ferritin 70-100 ug/l
Transferrin Saturation (TSAT) less than 50%
There are other tests like AST, ALT, and GGT that will indicate if there is liver damage and will be elevated. But they are not always elevated if early on in diagnosis and liver damage is minimal.
There is also serum iron and TIBC which gives more rounded iron picture for your body.
For Pre-menopausal women
Ferritin 40 -60 ug/l
Tranferrin Saturation 25-35% (anything over this and needs further investigation.)
Docs are hesitant to do further testing when your blood work comes back and everything falls into the normal reference range, but these are only ranges and are often not sensitive enough to pinpoint HHC or iron loading early enough. So you need to be your own advocate and demand more tests if you have any unexplained abnormal symptoms they can't find source. If your doc doesn't want to dig, find another doc. In HHC, patients go through and average of three docs and up to 10 years before getting correct diagnosis, and often this is too late or damage irreversible.
HHC afftects women equally as men, nut men are found sooner due to them not having a period as women do, so women usually don't find out until 60's or later, and men usually in their 40's and 50's.
So for all who need to know, and who are in a state of constant questions/worries/anxiety regarding odd symptoms the doc can't seem to pinpoint, ask for the screening for iron overload. They may be skeptical, they may scoff, they may tell you you are anemic, they may tell you they've checked your iron levels...be persistent or find someone who knows about this disorder. It is a simple treatment plan, and prevents many other common diseases and ailments.
Good health wishes to all, and thanks for being here. I have found many encouraging stories and posts from all of you. I hope this can help someone. I am not a doc, and don't have all the answers, but what I don know now has come from hundreds of hours of research and reading and compiling many experts findings over time.
I am a neurology patient. I have been one since September 2004. My symptoms were activated while on active duty. My primary doc consuled with Walter Reed's Neurology Clinic. After the following occurred: I started have spinning sensations which turned out to be vertigo and meniere's disease. I began havin tingly and shooting pain down my legs. I experienced pins and needle sensations when warm or under the covers. The back of my right eye became too painful to bear. Although, this happens at least monthly. Eventually, I was honorably discharged from active duty and sent to the Veteran Affairs Medical Center's neurology clinic. I have been in limboland since March 2005. Since arriving here I have had 19 MRIs. In 2006, two lesion seperation in time was discovered but no action taken. Now I have about12 lesions with three of them having been enhancing for one year. I have been told that it is not quite MS. So, I have been diagnosed so far with any disease that mimicks MS. Two Neurologists have stated my t2 flares are actively enhancing. But, would report my lesions are stable. And, one was going to suggest working up a report for MS. But, did not because I have been up to that point which is 2011, diagnosed with mimicking MS diseases. So, he saids to me MS is a difficult disease to diagnose. And, since then, there has been a reluctance to diagnose me. So, each resident insists on just treating my symptoms. I take baclofen, tizinadine, gabapentin and othrs for spacity and spasms. I take metlizine and direutic for vertigo and meniere's disease. I take steroids for inflammation. I take other meds that compliments those listed. The diagnostic studies done so far are MRIs 19 of them, VEPs 2 of them. Both were abnormal. I have had uveitis and optic neuritis many times over. prednisone liquid was prescribed. I even lost my vision for a week and a half. I have had blood and CSF workups. Now I must stop here because I hands are spacitic and trembling. I will tell you more later. But, this is my intro to everyone here. I hope to learn a lot from this forum.
Hi there, thanks for your story, I have a suggestion to check out irondisorders.org and they explain a lot about the relationship between neurological disorders and iron and even MS and iron. You may find something there to consider.
Wow, I've been on Medhelp for years and had no clue this group existed. I wish I had! I was going to type up my story, but it looks as though this group is pretty dead now. Let me know if anyone's around and wants to hear it, though. I'm going to finish up reading the rest of you guys' stories now. Frustrating though it might be, it's at least nice to know you're not the only person going through mystery neuro hell. Most of the time I think I'm just crazy and making stuff up because dozens of doctors have told me I'm normal, but then why the hell would I make this stuff up at 23 years of age when all I want to do is start my life instead of sit back and watch everyone else begin their careers, get engaged, travel to Europe etc.?
Thank you for the invitation. :) I started to type up my introduction, but I got frustrated because I'm having a lot of cognitive difficulties and can't seem to piece together my words or sort out my thoughts lately. I'll finish it later!
Basically I've been dealing with pains now for over 13 years. I've since been Dx with heart issues, hypothyroidism, different deficiencies, osteopenia and (type ll diabetes -diet controlled?). Last week I was told FM; but, not for certain. I question it all starting with a chubby kid flying down over a steep hill and bent up the front of his bike and wheel into my back. Also stupid of me trying to lift a 80# box up over the front seat of my blazer, twisted and snapped a couple ribs. Dah.
Anyhow, the winter months are the worst with pain only now that it's summer I'm still in pain this year. I'm also itchy; but, have no real rash. My pains are growing worse all the time, and my vision is getting worse. I had a ton of blood work, a lumber spine MRI coming up in 2 days, bone dencidy (spell check) study, and ultrasound coming up due to a possible goiter. Fingers crossed on 13 years of some possible pain relief. Sigh
Hi Amy, (I took the liberty to read a couple of your posts and Journal entries) could you please post again with a new post here in this group?
It will be more visible and it may also help the group, as it has been inactive
for a few weeks. It will be nice to kick start it again, lol!
The person who started this group, has pulled away temporary for health reasons and I was recently given moderator rights.
I think I might be able to offer you some advice, but I'd like to know a few more things.
What are your heart/CVD issues and what drugs are you on for that.
What are your stress levels & how is your husband's condition affecting you?
Have you ever been in therapy? Are you under the care of an Endo for your thyroid issues?
If you have this information posted already please let me know where I can find it.
You seem to have a lot of issues, which scream: One main overarching root cause for what seems to be a systemic "Autoimmune" type of condition.
(I mention Autoimmune type b.c I think autoimmune is a medical description of convenience, as there are more layers that need peeling- too complex, time consuming and unprofitable for the med. system to approach properly). If I were you I would not keep my hopes too high for significant
improvement with the conventional medicine, as they have a dismal record in treating chronic conditions effectively.
Why do you think this group was started?
Honestly, not that I want to sound negative, but I personally reserve conventional medicine only for acute situations like emergencies.
Just some food for thought. Your condition being systemic, requires a multi-faceted approach , involving many systems and
organs of your body that are interconnected and have been affected by- so far undetected- underlying causes.
I sympathise with your need for pain and symptom management -( I have been in a similar situation as you long time ago), but unfortunately the price you're paying is further gradual deterioration of your health. There are many alternative things and remedies for symptom management that are safer and inexpensive, without the unwanted side effects and I can share this information with you, if interested.
Thank you for the consideration and I'm looking forward to seeing your new post here. You may ask me any health question that concerns you.
I have training and/or experience in Holistic Health, Nutrition, Psychotherapy, Naturopathic Medicine, Hypnotherapy and presently working towards putting together a comprehensive Fibro-wellness program.
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