Have you seen a neurologist??

Discussion in 'Fibromyalgia Main Forum' started by tamsyn, Sep 22, 2008.

  1. tamsyn

    tamsyn Member

    Hi everyone ! I'm really interested to know how many of you have been seen by a neurologist. Many of the symptoms that accompany CFS are due to its affect on the nervous system. MS is another illness that affects the nervous system. When I look at the lists of MS symptoms, many of them are the same as the CFS symptoms. I assume a neurologist might help make a diagnosis between the two illnesses. Yet none of my doctors has ever suggested that I see a neurologist. If you have seen one, or do see one, has it been helpful in getting a firm diagnosis and in getting treatement?? Sometimes I think that maybe my CFS diagnosis isn't the right diagnosis; my nervous system seems so affected by my illness and yet I've never even talked to a neurologist! Should I request to see one? Any input is much appreciated -- thanks in advance for your helpful thoughts! tamsyn
  2. doggymommy

    doggymommy New Member

    I've seen two neurologists. I had an MRI (normal results), and an EEG (somewhat abnormal results which is apparently normal... whatever that means). He told me to come back when I had a flare up but it's impossible to get a same day appointment so I don't know how he expects me to do that. Anyway, I also saw another neurologist who gave me Amantadine.... I think that's the name of it... which made me worse, so I only took it for a couple of days. She basically gave up after that, told me to go to the immunologist (again).

    It's so frustrating because I also have severe brain fog/neurological symptoms like you and it really seems like there should be something wrong with my brain. But then again it also seems like something is wrong with my heart, lungs, etc. lol

    I would imagine it makes complete sense to see a neurologist though anyway... maybe they would find something. You should tell your Dr you want to see one and if he won't refer you then get a new Dr. Finding a Dr who actually believes in CFS is nearly impossible so I've found... I even saw a PSYCHOLOGIST who mocked me! "Oh I'm soooo tired... " in a whiney voice. Needless to say I didn't see him again.

    And now I'm rambling again... so my point is yes, see a neurologist because hey why not.
  3. labrat

    labrat New Member

    I was sent to a neurologist right after I became ill because my main symptoms were muscle twitching, severe fatigue, shakiness in my hands, some problems with coordination/balance, memory and concentration difficulties, and weakness/dizziness when standing. The walk-in clinic sent me for an MRI of my brain after the first appt and referred me to a neurologist. He did all sorts of tests including the MRI, evoked potentials, EMG, spinal tap, blood tests and standard neuro exams. The tests ruled out any neurological cause for my problems. When he couldn't find anything wrong on those tests, he diagnosed me with CFS and told me to see a psychiatrist. So it was no help in getting treatment, but I did get a diagnosis at least.

  4. moreinfoplease

    moreinfoplease New Member

    Don't know whether seeing them has helped treatment wise (at least to date), but I agree it is useful for diagnosis and testing minimally.

    The neurologists I've seen ordered a MRI of my brain and a sleep study, and gave the diagnosis of chronic fatigue. The MRI was normal, the sleep study showed alpha-delta sleep disorder.
  5. luvdogs

    luvdogs New Member

    I have a number of neurological symptoms: tremors, myoclonic jerks, bumping into things, tripping, falling, etc. First, MS has pretty much been ruled out.

    I also want to mention that I never met a neurologist I really liked, and most of them are really dismissive. That's not to say you won't find a good one, but just be careful.
  6. monicaz49

    monicaz49 New Member

    ive seen a neuro who suspected MS since i have so many common signs. However, the MRI has ruled it out. I always read that a large percent of people with CFS have abnormal MRI's with lesions (wouldnt that be considered MS then?), however, I don't know of a whole lot of us who have them.

    Our of all the specialists ive seen a neuro has been the best fit. Ive seen endo, gastro, infectious dis, etc etc.
  7. luvdogs

    luvdogs New Member

    but for some reason, the neuros didn't think it was MS. My doc said the lesions were typical for Fibro and CFS.
  8. kitteejo

    kitteejo Member

    I saw one back in 2003 when I first became sick to rule out MS (have two brothers with it). That was negative. Had all the neurology testing done at that time.

    Just went to a new one last month and he found no neurological problems and sent me on my way. He did not want to do any testing.

  9. efly

    efly New Member

    I think they are getting more information now from functional MRI"S.
  10. les80

    les80 New Member

    lesions associated w/ fibro or cfs as called myelesions...they are different than ms lesions. idk how but this is wat they told me! i think they do not cause damage to the tissue of the brain or something. they can differentiate between the two types.
  11. jole

    jole Member

    I have gone to three. The first ran all the tests and diagnosed me, put me on antiseizure and migraine meds, but was terribly condescending and a real pain in the a$$.

    The second one I really liked, although he didn't treat me with anything. Just reaffirmed my diagnosis and talked to my hubby about how this disease is one of the worst there is to live with, and he needs to support me in any way he can.

    The third one put me on Neurontin, then later Lyrica (which I cannot take), then back to neurontin. Of course, he insisted the only way to improve was with exercise and suggested yoga. Well, when I couldn't tolerate that, he said he couldn't do anything else for me.

    I too had the MRI, CT scans, etc. My brain MRI showed lesions also....and they do cause memory loss over time, but is NOT the cause of our initial cognitive problems, so I was told. They were concerned about MS, Parkinson's, etc. but ruled them all out.

    There is nothing wrong with going....they may reaffirm your diagnosis....but I don't think they do much to help. But then, who does??