Neurological problems

Discussion in 'Fibromyalgia Main Forum' started by luvdogs, Feb 21, 2008.

  1. luvdogs

    luvdogs New Member

    Does anyone else have neurological problems? If so, what are they? I have problems with balance, tremors, myoclonic jerks, head shaking in yes or no direction, and abnormal neurological exams. Sometimes my legs feel weak when I'm walking. Neuro says I don't have MS. She doesn't know why I have these symptoms, but she suspects its the Fibro I've had for so long (and CFS).
  2. sleepyhead127

    sleepyhead127 New Member

    these symptoms are not typical of fibro. See another doc and get another opinion, and review whatever meds you take. Myoclonic jerks are pretty common, but the tremors and balance problems need to be further investigated.
  3. monicaz49

    monicaz49 New Member

    I have or have had every symptom you mentioned accept for the head shaking. I have had an abnormal neuro exam, definitely have probs with balance, have on and off fine tremors, muscle jerks especially during sleep and definitely relate to the weakness in legs and then i have maybe 20 other symptoms. My neuro suspected MS but as of now, the MRI has not supported that.
    Although i dont see this in the majority of cfs people, Ive heard of them in a minority. Otherwise, you know lyme symptoms are nearly identical to cfs. I have a positive igenex lyme test just for the record, but have many negative WB tests and Kaiser docs insist its CFS , not lyme.
    So.....if thats the case then all this is CFS. Seems a little extreme though
  4. Missizzy

    Missizzy New Member

    luvdogs: Please take the time to check out my profile and look at some of my posts. My problems are almost identical to yours. I have fatigue, myoclonus, tremor (yes-yes), ataxia, and vertigo yet no pain. My symptoms hit suddenly and have worsened over the last almost four years.

    I, too, think I have MS but my very extensive testing has not shown it yet. As it stands, I am diagnosed with ME and a vestibular assault.

    Keep in touch. I'm very interested in your experience.

  5. ladybugmandy

    ladybugmandy Member

    hi all. i think MS can be subclinical and not show up on MRI's sometimes.

  6. luvdogs

    luvdogs New Member

    Dear Mssizzy and others, I'm wondering if your diagnosis of CFS (and fibro?) is correct, because you say you feel no pain. Both CFS and fibro involve pain, and both my doctors insist that the two diseases are closely interconnected (although I think the jury may be out on that one). But I think even CFS involves joint pain. I'm quite sure my initial diagnosis of fibro/CFS was correct, because I have all the classic symptoms of both diseases, including the tender spots, the chronic pain, trouble sleeping, foggy brain, IBS, etc. But I think there may be something else in addition to the fibro going on with me, because I can't find anyone on message boards (apart from a few, and they aren't sure about their diagnoses) who has so many neurological symptoms. I don't know what on earth else would be wrong with me, though. My boyfriend doesn't think I have MS, because I'm not oversensitive to heat. My fibro doctor, who is associated with this web site, insists that all my neuro problems are associated with my fibro/CFS. He says many fibro patients have neuro problems. The thing about fibro doctors is that they see tons of patients who have been misdiagnosed with MS, and who actually have fibro. So I think he might be afraid to go the MS route. Anyone else out there with neuro problems who has definitively been diagnosed with fibro or CFS? Mssizzy, I will look up your bio, etc. Thanks!!!
  7. luvdogs

    luvdogs New Member

    Monica, have you been diagnosed with fibro, or just CFS? Do you have pain and tender spots? What about joint pain? Sore throats? Swollen lymph glands? Trouble sleeping? Those are all symptoms of fibro and CFS. I wonder if you too, are being misdiagnosed, because so many diseases fit the bill for intense fatigue. On the other hand, maybe you do have CFS, and maybe neuro problems for that disease are just overlooked.
  8. Missizzy

    Missizzy New Member

    ME sufferers can actually have no pain at all. Through my research, I have learned that approximately 5-10% of us suffer no pain "just" a number of the other symptoms. I always feel a bit guilty stating that I don't have pain as I feel such empathy for those of you who do. However, my other symptoms are so severe that I am bedbound most of the time. I feel very fortunate that I don't have to deal with pain also.

    Has your neuro mentioned checking for any of the ataxias or sent you to an oto-neurologist to check for inner ear involvement? Have they mentioned hyper-reflexia ever? Were your neuro symptoms a gradual onset or sudden? Remember that many many people with MS wait years for a diagnosis and not all are heat sensitive. My son has MS and he loves the heat. His neuro has always been shocked that Matthew loves to sit in a spa or sauna.

    I'm so sorry you are suffering these symptoms. They are life-changing indeed.

    Take care,

  9. busybusymom

    busybusymom New Member

    Do you have migraines? Have you been exposed to toxic mold? I do not have all the problems you have but I do have problems w/balance, tremors and weak legs (amongst many others). I have severe migraine due to toxic mold exposure, which triggered my CFS and fibro.

    I was also tested for MS years ago - it was negative, thank God. But it took YEARS to diagnose the mold toxicity and in the meantime, severe neuro damage had been done, which will most likely never be reversed 100%.

  10. twitcher

    twitcher New Member

    I have numbness, tingling, whole-body twitching, nerve pain, muscle pain, muscle weakness, burning, crawling, stinging, water splashing feelings etc...all over my body. I have balance problems, vision problems, sore spots and more. I have constant tachycardia, POTS. I was convinced I have MS. I saw 6 neurologists had several MRI's, EMG's, spinal tap, evoked potentials etc..All has come back normal. My diagnosis is FMS. I do have the tenderpoints. I firmly believe my fibro is secondary, probably due to lyme as I had the rash years ago. I think I have way too much going on for it to be just FMS.
    [This Message was Edited on 02/24/2008]
  11. xchocoholic

    xchocoholic New Member

    I could've written this. My nuero problems turned out to be from gluten. I'd suggest getting a celiac panel and possibly tested through enterolab, but regardless of what any tests show, try eliminating gluten and see how you feel.

  12. luvdogs

    luvdogs New Member

    Hi busy mom, Yes I have migraines. I usually have about one a week. However, migraines run in my family. My mother had really severe ones, and now my sister has them. We don't live in the same house. But chances are good I inherited the migraines. I don't know about toxic mold. How do I find out about that?
  13. luvdogs

    luvdogs New Member

    Hi twitcher, Isn't it bizarre that you would have all those symptoms, and yet, your tests would all be negative. It really makes one wonder if doctors know all there is to know about MS and other diseases. My MRI was abnormal according to one neuro and normal according to the other neuro. The first said I had lesions that could indicate MS, but there weren't enough lesions to confirm the MS. The other neuro said that she saw lesions, but that they were normal. Dr. Lapp said he saw the lesions, but that they weren't typical of MS; rather, they were typical of fibro/cFS. Go figure!
  14. luvdogs

    luvdogs New Member

    I don't know. Lyme disease? Gluten? What direction to take. It's true that gluten gives me constipation and gas. I keep trying to go off of it, and then I cheat. But I haven't been tested for Celiac disease. My lyme check came back negative, but the literature says there are a lot of false negatives, so who knows? I did walk in a tick nest once (no twice), and I had a rash the second time, but it wasn't circular. I went to a derm, and he said everything was fine. Go figure, again!
  15. LuvQuilting

    LuvQuilting New Member

    I have FM, Focal Dystonia, Peripheral Neuropathy. I feel like just a mess. My neuromuscular dr. thinks the PN could be from elevated protein levels in the blood which concern me because it could mean cancer down the road. My father died of lymphoma at the age of 52. I'm 48. The neurological pain is getting worse regardless of medication. Lots of foot and leg pain, tingling, numbness, weakness everywhere. Then I find out recently that my mom's twin cousins had/have Lou Gehrig's disease! Great. I see my NM dr. next week.
  16. luvdogs

    luvdogs New Member

    My mother died of Lou Gehrig's. Her doctors told us the disease was not hereditary and could not be passed down genetically etc.
  17. boscosmom

    boscosmom New Member

    with the many neurological symptoms.

    could you explain ataxia?

    it will feel like i am walking in sand some.

    all my muscles, to include the face, feel tight.

    i have the internal tremor, worse on left side; twitching; dizziness; fogginess; buring stinging skin; vision issues; the list goes on...

    any suggestions?

    i have seen some of the top neuros in the country to include: mayo and muhammad ali center...

    all my tests and i have had everyone available for neuro stuff are normal...

    but, i am still scared and worried.

    ty all, sc
  18. busybusymom

    busybusymom New Member

    Luvdogs - Being tested for toxins is tricky now because of the insurance industry and lawsuits. I know the big lab in California is no longer doing myotoxicity testing.

    I would ask your doctor. If he/she looks at you as if you are crazy find another doctor who can give you reference on where you can be tested. From what I understand, basic allergy testing will not tell you anything about mycotoxins, which are the toxins that molds produce that make you extremely ill, i.e. neuro problems, respiratory problems, & more.

    Good luck. I'm feeling dizzy today and off-balance. It sucks!

  19. bunnyfluff

    bunnyfluff Member

    With heavy neuro involvement, always suspect Lyme. You said that your mother died from Lou Gehrigs......another typical Lyme mis-diagnosis!!!

    You say that you stepping in ticks and had a rash??? You have Lyme! No 2 ways about it! If you are not seeing a Lyme-literare MD, you will never get the right diagnosis.

    Please go to the site:

    *Fibro* (whatever the heck that is supposed to be) does not have neurological involvement. I just want to scream when I see that Dr's are trying to blame every symptom under the sun to a specific set of symptoms (tenderpoints) and not do the bloodwork necessary to rule out Lyme, mycoplasmas and toxic mold.

    I had a neg Lyme test (I'm sure it was Quest) a year before I got 2 positive tests, 1 from a "live" blood screen, the 2nd from Igenex, and technically I had some positives the 2nd time on Quest. I have been sick since 1999. I do not remember being bitten, maybe as a kid, but it can be transmitted by mosquitoes and chiggers as well.

    Please see all of the posts by Munch and twinofdar, or type lyme into the searchbox here. We have tried to get out as much info as possible.

    Please tell me you will.......
  20. xchocoholic

    xchocoholic New Member

    Typically if you have digestive symptoms from gluten, then it's causing other problems as well. These typically are either neuro, thyroid or blood glucose problems, but it could be all of the above. You could have skin related problems too though ... DH is a skin disorder / itchy rash that is recognized as celiac disease.

    I'm not trying to scare you, but I had constipation most of the time from 1990 - 2005. And then in 2005, I lost 10 lbs in one month due to diarhea. This was actually undiagnosed celiac disease. By then my digestive tract was too torn up to eat anything without it hurting. From what I understand my villi were gone by then.

    My GI at the time thought I was losing the weight on purpose. He was an idiot. Probably still is. He never tested me for celiac disease, but did a colonoscopy and endoscopy. I was diagnosed with GERD, hiatal hernia, colon polyps, etc and given every medication that is on the market including ones for constipation and diarhea. I even had my gall bladder removed.

    I wasn't tested for celiac disease until 17 months post gluten free because my GP didn't know what to do about it either. She told me that since the diet is the cure there was no need to run any tests. DUH !! I believed her too ... Hopefully, the medical profession is more educated now than they were in 2005.


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