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551343 tn?1506834118
Introduce yourself here.
Hi everyone you can introduce yourself on this thread.

What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.

You can read about me on the top of this page.

3 years and 1 month I have been waiting. Mariax
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Page 14 of 14
2034625 tn?1392646892
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.

Smiles,
Laura
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Avatar universal
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.
Palipitations.
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!

All the best to everyone!
Emma
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1917408 tn?1421955640
Welcome to the forum!

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.

Valerie
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Avatar universal
Hi Valerie,

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.

I hope you're having a good weekend!

Best wishes,
Emma
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1627868 tn?1333889942
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.  

Take care!
Sarah
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Avatar universal
Hi Sarah,
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.

All the best
Emma x
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1627868 tn?1333889942
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.
Sarah   =)
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2078882 tn?1333489661
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...
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551343 tn?1506834118
Hi and welcome i have copied your post over to the main forum so all the group will see it.

What other symptoms do you have?

My brother is diagnosed with dysautomia. His started with weird chills and anxiety.....and then high blood pressure. He is on betablockers now to try and get it under control.

My goodness fainting whilst driving it doesnt bear thinking about.

I think the stress of working hard is one of the things that will kick of symptoms if you do have something like POTS, DYSAUTOMIA, AND MS.

I know my brother gets worse like me when he is stressed out.

I think you have to follow every avenue if you want to get answers where ever they might lead you.

Its good you have support from your husband. I would go for it and at least see if there is a chance of something else going on.

Doctors always have to put it down to anxiety or stress.

I still have the great big scar down my belly which 3 doctors said was just stress and anxiety........which nearly ended up killing me.

So you go for it.

Big hugs. xxxx Maria
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2078882 tn?1333489661
Hi Maria,
Thanks for reposting me :)

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??
Hugs!
Kim
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Avatar universal
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.

Karen
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1917408 tn?1421955640
Welcome to the forum.

I hope you are able to get some answers soon. I can completely empathize, pain, and condescension from doctors are at the top of the list of stress factors!

I hope you found some good, helpful information on the site.

Happy Easter!

Valerie
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2034625 tn?1392646892
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...

Laura
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2117020 tn?1334635015
Hello, everyone.
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.
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2034625 tn?1392646892
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.  
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Avatar universal
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.
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1627868 tn?1333889942
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.
Take care!
Sarah
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Avatar universal
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.
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2112931 tn?1335102002
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.  

Sandy
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2034625 tn?1392646892
Hi Sandy,

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.  

Laura
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2012515 tn?1353879125
Welcome Sandy,
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.:)

Grateful and blessed,
Tammy:)
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2112931 tn?1335102002
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.  

You're all in my thoughts and prayers.  Hugs!

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Avatar universal
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.

Wishing the best to everyone!
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551343 tn?1506834118
Hi another invisible dont want you to think no one has NOTICED YOU LOL.

Could you impart your information on our main threads? I would be interested in reading it. Mariax
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2095501 tn?1333146866
Hello, all.  
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.

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2012515 tn?1353879125
Hello Missfett,
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!

Blessings to you,
Tammy:)
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2095501 tn?1333146866
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.
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2792668 tn?1340129601
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
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551343 tn?1506834118
Hi and welcome to our group. I have put your intro on the main board.

Can you tell us what symptoms you have?

I notice you have some interest in dysautomia. My brother has that.

Big and gentle hugs. Mariaxxx
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Avatar universal
dear gingerstidd,

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.

blessings,
binx



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3242961 tn?1352120476
Hello Everyone!

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
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3242961 tn?1352120476
Update: I had my 2nd MRI yesterday.

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.....     :(
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2012515 tn?1353879125
AmyKate,
I'm sorry there was no answers yet.Some things take awhile,even years as many on this forum and the MS forum have told me.So keep your faith and keep us posted.

Once you get new info you can start a new thread/post and that will be read quicker.

As I told you in the note I sent, there are some awesome members and they will be along soon.:)

Wishing you the best and lifting prayers too!

Hugs and blessings,
Tammy:)
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4055344 tn?1349382995
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.  
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Avatar universal
A blessed day to all,

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.

God bless all of ya,
Kimberly
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Avatar universal
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.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
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Avatar universal
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.
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4055344 tn?1349382995
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.
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1035400 tn?1351545284
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.
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2034625 tn?1392646892
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.  

Laura
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1035400 tn?1351545284
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.
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2034625 tn?1392646892
It sounds like it would be worth a try.  Sorry I don't have any helpful information to pass along, but I'll be thinking of you and hope that you get answers soon.  

In the meantime, I hope you'll post back and let us know how you are and once you get answers, what they were.  It may be helpful to someone else who comes here looking for the same answers one day.  :)

Wishing you well.  
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4173379 tn?1355360151
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)

Men

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.

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Avatar universal
Hi,

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.
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4173379 tn?1355360151
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.

Take care...
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Avatar universal
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.?
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2034625 tn?1392646892
The group has gone a bit dead in recent months, but could easily pick up again.  I'm subscribed on this thread as I'm sure others are as well.

Why not start a thread and tell us your story now that we know you're here. :)

Laura
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Avatar universal
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!
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390388 tn?1279639813
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
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1530171 tn?1448133193
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.

Best wishes.
Niko







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