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Neurology (Expert Forum)
Unusual symptoms
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Unusual symptoms
by sharon123, May 02, 2002 12:00AM
I have had unusual symptoms going on for almost two years now. First I had pins and needles sensations widespread over my body and occasional muscle twitching and after a few weeks it went away. A few months later the sensations and muscle twitching came back with some other symptoms such as ears ringing, lower back pain, hamstring muscle cramps, some bladder incontinence, and a general shaky feeling. I visited a neurologist because of a concern that it might be MS or something else and had an MRI and general exam. The Dr. said the MRI came back clear and my exam was normal. She felt MS was not a possibility because my symptoms were widespread and it doesn't usually appear like that. True? I was recently diagnosed hypothyroid and she felt that it was probably all related to my thyroid disorder. I have been on medication for a few months and still have these symptoms off and on. Do you have any advice? Thanks for your time.
Doctor's Answer
by CCF-Neuro-M.D.-JT, May 05, 2002 12:00AM
Sorry to hear about your symptoms. Glad that the MRI and exam were ok. Your doc is partially right. When there's widespread numbness and tingling along with other scattered symptoms, it's difficult to localize the lesion to specific spots in the brain that may be damaged by MS. However, there is a small amount of patients who DO have nonspecific, vague neurologic symptoms that don't localize anywhere and the MRI shows classic MS spots throughout the brain and spinal cord. In your case, though, the MRI (should have brain AND spine) was clean which makes the diagnosis of MS much less likely. If you didn't have the spine imaged, you should talk to your doc as MS can show up there too.
Hypothyroidism can certainly be a cause of your symptoms. Once treated adequately, your symptoms may improve. Another test that may be helpful is an EMG to see if this a problem of your peripheral nerves. Laboratory workup such as ANA, sed rate, blood count and electrolye profile can also help rule out other potential problems such as lupus and other rheumatological disorders. Finally, you can always seek a second opinion. Good luck
Hypothyroidism can certainly be a cause of your symptoms. Once treated adequately, your symptoms may improve. Another test that may be helpful is an EMG to see if this a problem of your peripheral nerves. Laboratory workup such as ANA, sed rate, blood count and electrolye profile can also help rule out other potential problems such as lupus and other rheumatological disorders. Finally, you can always seek a second opinion. Good luck
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I have been having similar symptoms for the past 30 - 40 days:
tingling in my legs and feet
wake up numbness in my hands
lower left eyelid twitch
I went to the doctor on April 18th and she did a full blood test to rule out "common" things that cause numbness (diabetes, thyroid, vitamin deficiency, anemia, etc.) My tests all came back normal.
I am making myself a nerve end obsessing about the possibility of MS. I spoke with my Dr. about this and she does not seem overly concerned. I want to go see a neuro but she doesn't think it is necessary. I wish I didn't have an HMO, I'd make an appt. myself. I go back to my primary on May 16th and I'll try to push her again.
I've also been trying everyday to post a message on this board but it tells me that it is full. I can't believe I finally found someone with similar symptoms. Please keep me posted on your progress.
Good luck to us all
God Bless,
Lisa
I am 36 years old and have had symptoms for at least a year now. I started with head pressure above my eyes, behind my ears and at the crown of my head. It progressed to singling in my arms and legs as well as painfull muscle twitching, ringing and pressure through my ears. Leg and hand stiffness.
I, too, have had the brain MRI for MS, an EMG (twice), full body nuclear bone scan, an array of blood work, and evoke potential test, sinus xray, neck xray.... so on, so on, so on.
Everything negative (good, I guess, except that I am still in pain).
If any of the others on this site figure out what they have, please let me know. I, too, am getting the "what now" from my doctors.
Good luck to all. (I am happy that everything is negative so far, but like you, I am wondering what the heck is going on.)
It started with just tingling and numbness in one hand and arm accompanied by pain and burning - and has progressed everywhere - including my face. I have some bladder problems and some muscle twitching and spasms. I am also extremely tired - all the time. I have had blood tests for thyroid, diabetes, lupis - and a c-spine MRI - all negative. No one seems concerned because my motor ability "does not seem impaired."
It is frustrating to know that something is wrong with your body - and to have doctors tell you that nothing is there.
I too have similar symptoms and went through the same frustration with doctors just scratching their heads and throwing anti-depressants at me. I eventualy went for a second opinion to a neurosurgeon and went through the same tests (blood, mri, eeg etc) which were pretty much normal but he also did a lumbar puncture (spinal tap) and found my pressure to be too high (Intercranial Hypertension). This can cause all sorts of neuro problems and is frequently missed by non-specialists. From my experience a spinal tap should be a mandatory step for any neurological condition that does not have a clear cut diagnosis.
It is very tempting to assume MS with these symptoms (as I did and got very scared) but similar problems are reported by folks with confirmed conditions like Meniere's Disease, Pseudotumor Cerebri/Benign Intercranial Hypertension (PTC/BIH) or Arnold Chiari Malformation (ACM). It is certainly worth mentioning these to your doc to at least get them eliminated.
Since becoming ill I have done a lot of research on the internet to try to understand why I feel so bad. It makes you realise you may not be a hypochondriac after all!
Roger
I have been dealing with dizziness/numbness&tingling in the head, neck, hands and feet/ringing in both ears/frequent urination/gross fatigue/memory problems/muscle weakness for over three years.
During the past couple of months I wake from a sleep and the tingling and numbness is really bad. It's wierd because my head has these waves or short circuit feelings. I have had lots of test, tried chiro, accupuncture, massagage therapy, tens therapy etc: I did have tests showing elevated mecury levels so I recently had my 7 mercury fillings removed at a cost of 7K.
And recently started a Detox product called NDF. I HAD NO IDEA SILVER FILLINGS ARE 50% MERCURY!!!!!!!!!!
Last year I spent 11k out of pocket on tests and trying different treatments.
My 5 year old daughter and wife have seen me constantly sick for over three years now and I promised to take them to Disney for a few days. My daughter is so excited but, I am sick. Maybe we will just try to go and put it into the hands of the Lord.
Last year was a bad year for my daughter as she broke her arm and while vacationing with her mom in Brazil had an accident and received 2nd degree burns down her arm and leg.
It seems like a lot of people in all age groups have these peculiar symptoms. Most Doctors I go to say I am to young for these symptoms, they normally happen when your much older and the body ageing (aging).
If anyone would like to email me my email is:
***@****
Thanks,
At first i had a tingling right foot and after that it progressed to my hands (the extremeties in general). Rapid temp changes can cause unplesant paraisthisias too. All tests seem normal (brain MRI and spine CT scans), and the neuro physical test (reflexes etc). I am pretty sure my prob is on the spine though as when i strech/bent the symptoms get worse. The last few months my right foot feels tired and stiff, some docs say that its stress while others try to blame it on an old marijuana smoking habit that i had (i ve totally quit for 3 years now). The thing is that as some1 else pointed out, i have to adjust to a completely different reality and its difficult. The symptoms are not very intense but they do get worse as time goes by and the only thing i can do is to pretend they are not there :(
All this has changed my personality quite a bit, i have really learned to deal with my problems and i always try harder.
I have been reading this forum, as I have had some very troubling symptoms for some time.
- About 6 months ago, I started having some tingling/numbness in my feet, and spasms/twitching in my calves. It never went away, but I just ignored it. It sometimes goes away, but always comes back.
- About 7 weeks ago, I woke up with my hands numb and tingling, which after a couple of weeks turned into burning and/or cold sensations in my fingers and up my arms and elbows.
I went to a neuro at Columbia-Presbyterian here in New York, and had some blood work and an EMG done. He was looking for peripheral neuropathy. Everything was normal, except for a pinched nerve in the sacral area, which the neuro said should not be giving me any of these symptoms. I had a Brain and C-Spine MRI - the neuro said it was normal. There were some small white dots on the brain MRI, but he said he has seen these before and they are normal.
- The past 2 weeks, I will feel the twitching and spasms in calves and feet, and I noticed that my toes will jerk and move. Now it it happening in my hands and fingers! Has anyone experienced this, WHERE THEIR TOES AND FINGERS JERK AND SPASM, ALMOST LIKE A TIC? I am so scared.
The tingling and numbness is moving around now too - the right side of my face, my ear, my lips, and I get cold, tingling feelings shooting around my body, esp. the extremities.
I am so scared and have been crying for weeks now every day. I am getting married in four months, and feel like I have nothing to look forward to. I am so scared that this is MS or some other horrible neuromuscular disease.
I am going to another neuro at Cornell Hospital, and am going to request another EMG, Brand and SPINE MRI, spinal tap, and ask what other types of bloodwork can be performed.
Does anyone have any advice or similar experiences? Should I be asking for the doctors for anything else? I am so scared - please help. Thank you so much. Vicki
Hi, I'm 27 years old and last year in October 2001 I started having a stomach pain/disturbance that ended up in acid reflux (U know the gnawing pain in your throath that feels as if a semi-tire spinning slowly) . I took Prevacid and it got fixed. 2 months later my symptoms:
1. Pain in the abdomen area (left and right) and a feeling of nausea. I feel as if I've been poisioned 1.5 months of constant sickness. Went to doctors (same routine depressed, it's in your head etc.) I also started to have hypertension and panic and depressive attacks.
Not because I was unhappy but due to the sickness.
I also had a 38 hours insomnia that accompanied all of this. I knew then that I'm about to step into something very unormal with my body. I work out and I'm in good shape so this is not an issue.
2. Not much later my nausea started to expand and I started to have some unexplained pains inside my head just as electrical pulses and sickening pressure at the base of my skull that felt as if I'm about to faint. The headache seems to be worsened after meals. I also had upper/lower jaw pain that was running through my teeth (randomly) as if I had taken severe bites out of ICE/LEMON. This is very weird since I was never sick in my life. I've been on blood pressure medication and serotonium resoration (paxil) I still believe that all this malfunctions are comming from the middle of my body (abdomen area) I don't know if I have IBS or what in the world I have. It seems that if I allow air into my stomach and expunge it out I get a little relief (that one needs practice :-)) I've been in this condition for about 8 months already and still don't know what's going on. #2 also looks loose and not like it used to be before. I'm also affraid to drink water (paranoia of lead poisoning etc) Diet coke seems ok.
3. February 2002, I started to have muscle spasms and involuntary twiches (small scale). When the nausea was severe; which it was for me for about 1.5 month, all I did is sit around and do absolutely nothing. I looked ok from the outside but something very weird was going on inside. I'm in good shape and nothing is visible from the outside. I did notice when I had severe pains inside my brain that my pupils were contracting and expanding visibly like my heart beat. Very odd.
4. Latest news, March 2002 now I have something new. Pain in my head is 80% less and the new adition is I get dizzy as if someone unplugs me for just a second. I get a sensation of motion sickness that lasts for just a fraction of a second and comes at random times.
My teeth only hurt when I go to sleep (upper rabbit teeth) they feel as if someone is applying current to them and mostly when I lay on my back. What in the world is wrong with me.
5. I started trying pot as some friend suggested. Yes it does help the nausea (more like it blocks it) but I get the "current" like pain inside my skull and the jaw/teeth pain instantly after smoking. This seems to be triggered by the weed. It does help me go through the night but with these side effects.
I don't want to smoke weed, I'm not a drinker nor a smoker. Nausea seems to come and go and sometimes i feel sharp stabs around the liver area and sometimes in the opposed side in the pancreas area. Most of the time when I'm nausiated it comes from those two places.
I did notice that if I interact and do things the pain goes in the background but I think that's about it. I just forget about it. I'm already sick entire of this weird illness. If anyone has any idea what's going on plz e-mail me.
QUICK DESCRIPTION OF MY SYMPTOMS.
A. Pain in the spleen area.
B. Pain in the pancreas area.
C. Pain in the middle upper abdomen.
D. Pain in the liver area.
E. Heat flashes.
F. Weird discomfort.
G. Bowels don't look normal, very loose and lots of mucus. Long time since hard healty feces. only 10% of time they look ok.
H. Trembling (I solder electronics every once in a while)
and just found out that I can no longer hold the soldering iron steady (I'm 27)
I. Vision blurring... not all the time.
J. Stabbing pain in the eyes.
K. Mild background pain at the base inside the skull daily.
L. Stomach acid. (does not come up my esophagus)
M. Motion sickness without being on anything.
N. Sex drive down to 0.
O. Even when I'm ok I still feel the nausea in the background just waiting to get me.
P. That lead heavy pressure in the back of my skull radiating through my gums and snapping & popping.
The only thing I can confess is that I do go to sleep very late at nights (computer geek) and being doing it for about 8 years. Still I've never had anything like this.
The worst is that doctors don't know what this is.
Speculation... IT's being happening to many people lately starting in year 1999' and up.
Anyone that experiences these symptoms please feel free to e-mail me to discuss them further or possibly to develop a pattern of everyone that has this, we might find out what's triggering these. Dust, detergents, animals, water, athmosphere changes, going outside, smoking marijuana, we need to know.
Unless the government is restoring the country with our medicine money.
****************UPDATE 05/01/02*****************
Latest Update, my nausea/ibs symptoms subsided I now experience the back/base of the skull pain/pressure and random pulling on my teeth upper and lower. I still have pains left & right of my upper abdomen. I also experince extreme teeth sensitivity only in my upper "rabbit" teeth but only when laying on my back.
I can wake up with no pain then after any meal or a glass of water I instantly feel the pulling/lead sensation in the back/base of my skull. Also when this occurs I feel sounds as if wafers (popping & snapping sounds) slowly squashed in the back of my head at the base. When this inflating feeling occurs it stops just seconds from being intolerable I also feel as if air is being released through my nose. Activity seems to make these symptoms less painfull and sometimes if I get caught up in a discussion I even forget about them.
It's still verry annoying since I had no health problems prior to October 2001.
I still don't know what's wrong nor my doc.
HELP!!
l8r and good luck to everyone and I'll pray for all of us this condition is not something to be unserious about.
I'd rather have stiches that this ****.
***@****
What kind of metal and where? Did some one specific say you can not have an MRI?
I have a plate of titanium on my skull an have brain MRI without any problems. I would discuss that more with the radiologist to make sure you can not have one done.
Good luck! Amo
Email me if you want to discuss
***@****
I went on with these symptoms (all the ones all of you described) for probably 2 or 3 years (being called a hypocondriac (spelling?). Finally was diagnosed when I had a blind spot in my eye. That is when they did the MRI and found the plaques on my brain. Sorry may not use all the right terminology.
I am currently having a lot of problems with the tingling in hands and feet and numbness. My Neuro sent me to a plastic surgeon to take care of the carpal tunnel he says I have. (and boy do I) but now my plastic surgeon says I need to consult with a vasticular surgeon.. that I am having problems with circulation also.
When I do anything with my arms up high.. they go numb.
I have anxiety attacks (well my dr calls them that) and I take Paxil for that.. it causes extreme headaches and I am trying to get on something different.
I have taken Nuerotin for the pain in my joints and muscles but it made me convulse. The original drug they gave me for my MS (Avonex) caused me to sieze. I am now on Copaxone. Daily injection.
Things change every single day.. new symptoms new feelings.
I know that it sucks to have something and you dont know what it is... and it is a relief when you find out that it actually is something.. and you arent crazy after all... but for all of you out there that have not been diagnosed with MS.. I hope for your sake its something a little less cruel... Ms to me is a cruel disease... it lets you think everything is going to be ok.. then bam.. something new... some get sick.. some never do... its just a very unfair disease.
Blessings to you all and I hope you all become well.
Oh by the way.. I also have Hypothyroidism. (take levoxil for that)And acid reflux... bowel problems and its hard for me to urinate... sound familiar?
Stacey
At times I feel short of breath like my lungs just dont work properly, I get pains in my abdomen and back and in my groin area...cramping in my calfs if I stand for a long time, continual headaches and stiffness.
I am a 35 year old female that was totally athletic growing up. I show dogs and work a full time job. All I can say... take it one day at a time. My brother is also having problems with HYPERTHYROID and Panic attacks. Niether of us were ever very sick as kids.
I would like to know if anyone else has had:
1)reaction to live meassles vacines as a child
2)Mono as a kid (Epstien bar virus)
3)any kind of parasite as a kid
4)had a glamaglobin shot
5)Grew up in El Paso Texas or other areas of Texas
I am just trying to figure out some things for myself.. if any of you have had any of these in the past please email me
***@****
Thanks
Stacey
Hi all,
While I have some of the same symptoms as far as right sided weakness, right foot drop, incoordination. I also have Bladder retention, loss of peripheral vision on right side, slurred speech, cognitive problems, severe headaches.
It took me 4 years ... many doctors and tests before diagnosis.
I have Lupus which caused central nervous system vasculitis
I know it's easy to get discouraged but some of these illnesses are extremely rare and tests to diagnose are extremly invasive. In my case it took a brain biopsy and a staff of neurologists and rhuemetologists.
Some tests that are less invasive and very useful were the SPEC scan (blood flow within the brain)
and PET scan (shows how the brain is utilizing glucose)....glucose is food for the cells (brain synapse) and if it shows areas with Zero or decreased glucose uptake, they know that is a problem area.
Very best of luc in your search for answers,
Sandy
P.S. if you would like more info on central nervous system vasculitis. www.cnsv.net
How is it possible that so many people, including myself, have these weird symptoms with only a few doctors recognizing them?
If I talk to my docs, I don't see any sign of recognition in their eyes! How is it possible no health center exists for undiagnozed diseases? Probably a commercial reason?
I have so many weird neuro symptoms but mine are aggrevated by simple triggers. I can not lift anything heavier than 500 gram or an instant outbreak of symptoms occurs. Same happens when my nail hits something. When I gently rub the skull's skin my spine is paralized for a few seconds and my eyes become very sensitive to light. They become painful with preasure behind them. THIS TRIGGER IS SOMETHING UNIQUE I never saw any post mentioning this.
My GP believes it is all because of the psyche and sent me to a shrink and grouptherapy for people with unexplained pain. Th therapy is almost finished and din't help me. What the hell am I doing at the shrink? I am sure it is nothing psychological. The symptoms just drive me crazy.
My neurologists honestly told me that they can not explain and diagnoze every problem. None of them suggested my psyche to be the cause.
I suppose we still no just a little about the human body and have to hope that a new generation wil have more answers.
I had to laugh a lot while reading michael's mail. He's right. However, do not give up to find an answer since your disease may be progressive (mine is). It becomes much harder to invest energy in looking for the cause if your general condition becomes even worse!
All the best to everyone.
Rody
I also have been diagnosed with anxiety disorder...probably triggered by my appaling health. There is never any trigger for the symptoms...but I feel like I'm dying when I have a severe attack. I have been taking Zoloft for 2 yrs now...have no side effects, and the only time I have an attack now is if I'm in severe pain....or forget to take a tablet! I also have most of the symptoms described on this page...and many other problems.
No wonder my body is reacting with anxiety attacks!!!
I have found that the best thing to do is to keep pushing myself to do as much as possible with my life. I have been through stages where I can't get out of bed...but I try to find some reason to make myself get up and moving!!!
I am only 29 and cannot remember ever being healthy!
I am lucky to have a doctor that believes in me...and keeps pushing for answers...hopefully I will find them one day! But untill then...I refuse to be a slave to my pathetic excuse of a body! Smile!!!
Huglbugl
- tingling that is widespread (face, back, arms, legs, etc)
- numbness if I drink in my chin, gums, jaw and lips
- pain all over, especially near rib cage
- increased washroom visits (I am known for having a bladder of steel!)
- dizziness and lightheadedness (sometimes my knees give out)
- intense fatigue (I think I can, and want to do things but when I try I am useless).
- weight gain because I just can't seem to do anything
- incredible stiffness in my legs, arms and feet
- a twitching right eye
- trouble breathing
- an inability to stay focused
and more I am probably forgetting.
I have been feeling terrible and have tried to get help from doctors. I have had every blood test done in the book, and they show nothing. I have had a chest x-ray, face x-ray, an EMG, two carpal tunnel tests (including arthritis), and I did an MRI a year and a half ago (for unrelated headaches before this began) and they all showed nothing. Yesterday I went to my family doctor I've been seeing since before birth, and he was so confused... he suggested I go to a rheumatologist and an internist, but I don't understand why. I am tingling all over and he thinks it is in my joints? I am no expert, but I was under the impression that tingling was a neurological phenomenon, and my family agrees.
I used to be a pretty healthy person, but over the past while I feel like a hypochondriac, except that I know the symptoms are real. I want to be my old self again, and I want someone to tell me how to get there, but no one seems to take this seriously. I typed up a long list of symptoms, medical history, everything, and my doctor wouldn't even read it. Do I really have something wrong with me? If so, where should I go next to get it fixed, or at least recognized? I am 21 but I feel like and old lady. I just want my life back. Reading this forum atleast I know I'm not alone, I hope we all whatever it is we need to feel like ourselves again!
Eventually, I was diagnosed with fibromyalgia, and also with chronic fatigue syndrome. My husband was diagnosed with pernicia (sp?) anemia. These diagnoses did not raise our spirits. We were left completely dissatisfied by the medical field.
I truly believe that although medical science cannot run a single test and point to a specific test result, and state, "there, that's exactly what you have - this test prove it", that there are still many undetectable illnesses out there and that you and my husband and everyone else on this site with common symtoms are truly ill and not hypochondriacs. You are not losing your minds. Your symptoms are not caused by stress or your imagination or something you ate or your hormones. (Although I do believe stress and other factors can exascerbate your symptoms.) You really do have something wrong with you and medical science can only guess at what it is, if that.
So, hang in there. My symptoms did subside a bit and my life is a bit more tolerable now. Just as one of you wrote, you do try to adapt and your image of normal has to change in order for your very survival. Life threw all of you a tremendous curve ball. It's not fair and it's hard to keep your spirits up when things are at their all-time hardest. You are desperate to return to your old life. Your friends and family are concerned about you but you can see a bit of doubt in their eyes. Is she really ill? Or is she crazy? Is she just bidding for attention? Why can't her doctor do something for her? You start to keep your complaints to yourself but this is next to impossible but your disablity is so incredibly invasive. It affects every task you attempt, every move you make, every function of daily living. As I write this, I firmly believe that most of my symptoms have gone into a remission of sorts. I still have some bad days, but I also have some of what I call "75 percent normal" days and relishing these days and remembering these days is what gets me through the bad ones, because on bad days, I keep telling myself that I'll have a good day soon. I have more good days than bad right now and for this I am very greatful. Someday medical science will catch up and we will be treated more effectively. Until then, hold on to your good days, or simply your good minutes. Hug your children, your spouses, your significant others. Pet your dog or your cat. Have a good cry. It will release endorphines that will make you feel a tiny bit better, even if it's only for a few moments. Remember that you are not alone.
Debbie
Thanks for the validation. I think that is the biggest thing to deal with--that people-doctors, spouses, friends-look at you as though for some reason, you feel the need to gain attention or sympathy by pretending to be ill.
I've been to two neurologists now, have had a normal MRI, normal spinal tap (one ogliclonal band, but the docs said it's not necessarily indicative of anything), and a normal nerve test... I couldn't deal with the pain of the needle EMG a year ago, the docs REALLY want me to have another one, so I have one scheduled in a few weeks.
I also have juvenile rheumatoid arthritis, which I've had ever since I was a baby (I'm a 27 year old female). Needless to say, this **** SUCKS. Sometimes I have "good" days and sometimes I have "bad" days, but as that person above so eloquently said, my perception of what is "normal" has had to severly change as of over a year ago. Nobody can tell me what is going on with me. At one point, they thought perhaps MS, but now they think that MS is "very unlikely" because I have no lesions. I've had SCADS of blood tests, but to no avail. I'd think this were fibromyalgia, but I don't seem to have as much PAIN as those folks have. Instead, I just can't walk, or STAND for ****. This illness has had an extreme affect on my life, and in combination with my athritis really makes things quite a challenge. I'm angry that nobody can tell me what's wrong... I'm angry that I have to have yet another TEST that will probably do little to NOTHING to actually help me reach a diagnosis. And even if I do have a diagnosis, will anything actually be able to HELP me? Who the hell knows, at this point. Reading your posts have helped me stay strong, though, with the knowledge that we can all help one another out when everyone else things maybe we're a little bit crazy. I know I'M not.
--4s.
I too have had many of the symptoms you all have. Mine are alittle different in that I have tremors. I shake all the time. Especially when I lift my arms and legs. I don't know what's wrong with me. I've gone to to doctor's so many times and they keep telling me nothing is wrong.
My symptoms are:
Lightheaded
Tremors
muscle twiching
occasional fever
Does anyone have the same symptoms with a diagnosis? I can't handle this anymore. The worst part is thinking that I will never feel normal again.
Monica
I was reading all the comments and wanted to advise those who have not had one to have a spinal tap and an eye exam of the optic nerve. I have had all of the symptoms and more and was diagnosed with intracranial hypertension five years ago. I also have lupus and am in the process of being worked up for myathenia gravis.
If you can, have a spinal and brain MRI - I never got a spine one. If you are on dierutics remember that they can make you feel dizzy and tingly as can hypothyrodism and heart problems, and a few other diseases that arn't neuro based. I would advise an echocardiogram as well.
I had lupus for yeears before being diagnosed with the IH and the entire time I had the IH i kept telling them about my muscle burning and fatigue, terrible fatigue after exhertion and by the end of the day unable to even use muscles, tingling and so on and it's not until now that an EMG was done and the MG blood tests. EMG was not normal -s till don't have the blood work back.Lupus can also cause many and mostof the symptoms here but is an easy blood work up.
MS can be very deceptive for years and eyars and years but many ,many things including chronic fatigue and fibromyalgia and IH can cause your symptoms.
I havea friend with severe chronic fatigue and she has all of the symptoms including bowel problems and sleep apnea and orthstatic hypotension (another cause of dizzyness).
These things can be really hard to diagnose.
A spinal tap is good because if you have MS the cells will show up in the fluid and if you have IH you brain pressure will read too high.
Symptoms of IH
Papilledema (have you had your eyes checked for optic nerve damage)
pressure severe headache behind the eyes, vomiting, nausea, dizzyness, ear ringing, whooshing, pins and needles, fatigue, muscle fatigue blurry, double vision, visual disturbances )hallucinations), some of us have more serious neurological defects such as memory loss, confusion, trouble walking and excercising and so on - even breathing. (not everyone has all of the symptoms but everyone has increased pressure and papilledema)
symptoms of orthstatic hypotension
dizzyness on standing, fainting
Chronic fatigue and fibromyalgia
cause all kinds of issues -dizzyness, irritable bowel, confusion, orthstatic hypotension, sleep problems, muscle twitching,numbness, tingling - the list is really, really long and quite disheartening.
One thing to remember - if you have had all the tests more than once you probably have Chronic fatigue as that is undiagnosable by blood work. Fibro is diagnoses by trigger points.
TEsts I've had and would recommend becuase you can have it done in the US if you want too.
EMG and RNS (rapid nerve stimualtion)
echochardiogram (for dizzyness, breathing problems - catches what ekg's don't)
ekg (or is the heart one eeg??)
MRI brain and spine
Blood work ups for Lupus,hypothyroid,hormones, arthritis and so on
Urine test
spinal tap (no fun at all )
Eye exam for health of optic nerve (usually the first to damage in Intracranial hypertension and brain tumors)
Fibromyalgia trigger point test
I wish everyone luck - I know how hard all of this is and how hard it is to be ill and not have people listen to you!!
Good luck,
Kerry
I know I went on and on, and my English is terrible, but I was just happy to know I am not the only one in this world that is worried, freaked out and upset because no Doc can tell me what is truly the matter with me. Thanks for listening and please reply with any information possible. Jodie
My story: 46 to male suddenly (June 15th) had tingling and numbness spreading up from my feet and in my hands. Occasional numbness of right side of face. Even my penis has gone numb (great, huh?).
Went to see PCP ... sent me to neurologist who, in first exam, found me "completely normal" and sent me for a neck MRI. That was negative and in the four weeks after the neck MRI to the next appointment with him I went downhill, at times barely able to walk as my right leg was very, very weak. My wife says it was so weak a child could push down on it and it would collapse.
Went to see the neurologist of the follow-up appointment. He said everything was fine in the MRI. I demonstrated to him that I walked like a drunken sailor and have noticeable weakness. He agreed and sent me for brain MRI and spinal tap.
Two weeks later saw him again ... found low B12, high homosysteine, and elevated protein in the spinal fluid. Brain MRI was normal (although he DID see an unusual 'artifact' in the scan which he said he would follow up on; when I asked him about it Tuesday, another two weeks later, he said, "Oh, yea, I ought to do that.").
He said that probably wasn't a CNS problem, come in for EMG studies. He named CIDP (Chronic GBS) as the likely culprit or, of course, UNKNOWN.
So, this Monday I went in for the EMG and he practically electrocuted me and then pronounced it 'completely normal.' He insisted that I come in the next day for a follow-up.
Here's the upshot and the kicker: I came in with my wife (as note taker). He announced that some tests were borderline (as described above) and not really indicative of any particular disease. I expected that and am thankful. He then said, "Since I know that you do not have a big ego I will tell you something I would not tell 99% of my patients" and then went on to say that I had exaggerated and made up my symptoms. Not only that but he claimed not to remember that I had low B12 and high homosysteine (he said that elevated protein was not enough for a diagnosis without clinical observation and I said “what about the B12 and homosysteine?”). He further said that he did not remember finding any leg weakness (only that I had ‘claimed’ it) but had not reviewed his notes.
Needless so say, I am mad. I have not had a health problem in 30 years. I do NOT have a history of going to the doctor for anything or everything. Furthermore, my numbness and tingling are still here (I am controlling them with Neurontin). So I am at a loss. I guess if it gets bad enough I will get a reference to another neurologist.
Wendy
I have a thought - at least it might be a try - we are all in the same boat. They have no clue yet. I have been doing research on my own like many of you. I have recently discovered that many of our symptoms are similar to that of household and lawn & garden chemical poisoning. I did a search on diazion poisoning the majority of our symptoms were in there. Try to think about what you were doing a week or two before you got sick. I was putting down diazion on the yard. I am going to talk to the Dr. tomorrow and see what he says. Maybe some of the chemical got into our well and that is causing the problems. Maybe it was a chemical in the flea spray. I don't know but I thought I would share that with all of you. Fleas and ticks have been bad this year. We have been treating our homes and pets with some harsh chemicals - maybe - just maybe we need to look there. I will keep you posted. Lets keep sharing information. God Bless each of you for your strenght and determination. Just remember, You are not alone, You are not crazy - You know your body better then anyone, You know that something is wrong and we will find an answer together; God willing! - Lightning
Having many of the same symptoms listed here. I was diagnosised with Fibromyalgia in 2001. Proi to all the symptoms which came on gradually. I ran a successful business and traveled extensively. I am a 48 yr old female who was very athletic and walked 5 miles a day. Now I do good to walk from the bed to the couch. I recently had an MRI and full bone scan. The MRI reveiled white something on my front left temperal lobe. My Internal Medicine doctor said it was nothing. The bone scan showed degenerative something with rhemotiod arthritis in my lower back.
I'm not sure they have hit on the correct diagnosis yet. I have a rather unusual medical history:
age 4 double phnemonia (doctors thought polio - couldn't walk)
8 tonsillectomy
15 thyroid surgery
20 kidney stones
21 lyme disease
23 gallbladder surgery
29 kidney stones
31 paracarditis
33 migraine headaches (started after auto accident)
38 hystorectomy
39 kidney stones
41 bacterial meningitis
42 post tramatic stress + symptoms from auto accident
43 hives
43-45 major dental surgery abcess (abscess) on one tooth
46 diagnosised with Fibromyalgia
47 Restless Leg Syndrome
48 High Blood Pressure
Have any of you had similar histories. I am trying to pin point what might have brought this on.
I have also been given some information on Post-Polio. This Undiagnosed Childhood Polio cause Chronic Fatigue Syndrome in Women Baby Boomers. I am anxious to talk to anyone who has knowledge of or has been diagnosises with this.
One doctor has said that many patients with Fibromyalgia also
have MS. I have a good friend with MS and Fibro. We have mirror symptoms.
Please over look typos.
Thanks for being here...any comments are appriciated.
Judee
Having many of the same symptoms listed here. I was diagnosised with Fibromyalgia in 2001. Proi to all the symptoms which came on gradually. I ran a successful business and traveled extensively. I am a 48 yr old female who was very athletic and walked 5 miles a day. Now I do good to walk from the bed to the couch. I recently had an MRI and full bone scan. The MRI reveiled white something on my front left temperal lobe. My Internal Medicine doctor said it was nothing. The bone scan showed degenerative something with rhemotiod arthritis in my lower back.
I'm not sure they have hit on the correct diagnosis yet. I have a rather unusual medical history:
age 4 double phnemonia (doctors thought polio - couldn't walk)
8 tonsillectomy
15 thyroid surgery
20 kidney stones
21 lyme disease
23 gallbladder surgery
29 kidney stones
31 paracarditis
33 migraine headaches (started after auto accident)
38 hystorectomy
39 kidney stones
41 bacterial meningitis
42 post tramatic stress + symptoms from auto accident
43 hives
43-45 major dental surgery abcess (abscess) on one tooth
46 diagnosised with Fibromyalgia
47 Restless Leg Syndrome
48 High Blood Pressure
Have any of you had similar histories. I am trying to pin point what might have brought this on.
I have also been given some information on Post-Polio. This Undiagnosed Childhood Polio cause Chronic Fatigue Syndrome in Women Baby Boomers. I am anxious to talk to anyone who has knowledge of or has been diagnosises with this.
One doctor has said that many patients with Fibromyalgia also
have MS. I have a good friend with MS and Fibro. We have mirror symptoms.
Please over look typos.
Thanks for being here...any comments are appriciated.
Judee
Having many of the same symptoms listed here. I was diagnosised with Fibromyalgia in 2001. Proi to all the symptoms which came on gradually. I ran a successful business and traveled extensively. I am a 48 yr old female who was very athletic and walked 5 miles a day. Now I do good to walk from the bed to the couch. I recently had an MRI and full bone scan. The MRI reveiled white something on my front left temperal lobe. My Internal Medicine doctor said it was nothing. The bone scan showed degenerative something with rhemotiod arthritis in my lower back.
I'm not sure they have hit on the correct diagnosis yet. I have a rather unusual medical history:
age 4 double phnemonia (doctors thought polio - couldn't walk)
8 tonsillectomy
15 thyroid surgery
20 kidney stones
21 lyme disease
23 gallbladder surgery
29 kidney stones
31 paracarditis
33 migraine headaches (started after auto accident)
38 hystorectomy
39 kidney stones
41 bacterial meningitis
42 post tramatic stress + symptoms from auto accident
43 hives
43-45 major dental surgery abcess (abscess) on one tooth
46 diagnosised with Fibromyalgia
47 Restless Leg Syndrome
48 High Blood Pressure
Have any of you had similar histories. I am trying to pin point what might have brought this on.
I have also been given some information on Post-Polio. This Undiagnosed Childhood Polio cause Chronic Fatigue Syndrome in Women Baby Boomers. I am anxious to talk to anyone who has knowledge of or has been diagnosises with this.
One doctor has said that many patients with Fibromyalgia also
have MS. I have a good friend with MS and Fibro. We have mirror symptoms.
Please over look typos.
Thanks for being here...any comments are appriciated.
Judee
doctors. I finally figured it out for myself and I would bet that it is alot of your problems too. I wish that I could email each of you individually since most of you posters may not come back to this forum. My problem was TOXIC MOLD. I know that you have probably seen alot of this in the media and I did too. I did not think that it would ever effect me but it did. Please understand that the mold puts off neurotoxins that can create severe effects. One of them being food allergies. Please dont write this off and say well that has nothing to do with my symptoms...oh it does.
headache in the lower back of head (always)
brain fog
muscle spasms
fatigue
hot flashes
cold extremities
weird feelings
depression/anxiety
it all fits people....
1. check your house for mold..go to lowes the kit costs $8.00
2. Make an appointment with your allergist. I bet you are now
allergic to something that you were not allergic to before
you got sick!!
3. Swear off sugar and start eating healthier.
4. Dont expect your doctor to know anything about this.
5. Dont wait until it turns into lupus,ms or another autoimmune disease because it will.
6. It may not effect any other member of your family. It only effects some people. I think people who are highly allergic. Doctors will tell you that it only effects elderly and infants but everyone that I talk to with mold was pretty fit before they were sick.
I never would have believed that mold could have caused all of my problems and that the medical community could be so oblivious.
Progression:
1. you are exposed to mold or another toxin. (could be something that you are just allergic to and dont know it.
2. candida yeast will start burrowing holes into your intestines, and gut since your immune system is compromised
3. You will start developing food allergies from food passing from your gut into your bloodstream
4. Your body becomes weaker and weaker finally you create so many antibodies that your body no longer knows the difference between something foreign and healthy cells.
5. You develop lupus, ms or another autoimmune disorder. This is where the doctor comes and and says...I found it.
I would appreciate any input.