What benefits are there for CFIDS'er to see a Neurologist?

Discussion in 'Fibromyalgia Main Forum' started by ladude, Jun 18, 2008.

  1. ladude

    ladude New Member

    My primary wants me to see a neurologist.

    Has anyone with CFIDS/ME been helped previously by a neurologist?

    Can't think of what benefit would come out of this or what questions I should ask him.

    Any ideas?

  2. jaded_lady

    jaded_lady New Member

    My neurologist is helping me. I had migraines, he has helped that, but also he is helping my FM/CFS.

    He found my Vitamin D defiency, but any Dr. should be able to check your levels of vitamin D.

    My primary tested me in 06 and I was at the low end of the vitamin d levels. If I had understood the impact vitamin d makes with these illnesses, I would have asked the Dr. then to try and get my D higher.

    Instead in 08, the neurologist finds my level at 6 and put me on prescription vitamin d 50,000 IU 2 times a week.

    That has helped my pain, fog and fatigue. I still am slow and want to sleep lots, but I feel better.

    He has helped me more than any other Dr. But I think that goes Dr by Dr.

    Good luck and let us know how your neurologist does.

    I hope you have insurance, they are expensive.

    BILLCAMO New Member

    the DX of CFIDS/ME is strictly a process of elimination. No definitive test has been found yet. It is also possible that a Neurologist may find something that the other Drs. have missed.

    Blessings ,

  4. ladude

    ladude New Member

    thanks for all the suggestions.

    A sleep study would be beneficial. trying hard to stick to a schedule and that seems to help a lot. Just avoiding bright lights late at night is a big help.

    Living in LA my vitamin D level has to be good. I love sitting outside in the sun (when its not 108).

    we'll see what happens.

  5. gapsych

    gapsych New Member

    I am going to my PCP tomorrow and ask him if I need to see a neurologist as for the first time in eight years the clonazepam is not helping my RLS. I know I am not anemic as I had blood tests done several weeks ago.

    I am also want to be prescribed Mirapex but not Requip, to help with my pain levels. I took mirapex eight years ago, so I know I can tolerate it.

    I am trying to print out several articles about people benefitting from mirapex for FM pain.

    I absolutely agree about a sleep test. When I had mine done, it did indeed find the RLS even on medication, plus serious sleep deficiencies. At that time I was anemic.

    For a lot of us, I think sleep is a crucial issue.

  6. Meg1710

    Meg1710 New Member

    As my primary presenting symptoms were neurological, my investigations started with a neurologist in 2007, then a second neurologist. Apart from doing stacks of neurological tests and them all being negative - the neurologists were next to useless! They basically implied that because they couldn't find anything in their testing that what I had was a somatoform illness.

    They did not suggest anything outside of their diagnostic box and certainly did not test for all the things which subsequently have been found to be possible causes of my problem. Certainly the neurologists I saw made no admission of any possibility of it being ME/CFS/CFIDS/Fibro and I would further suggest they wouldn't know these conditions if they fell over them!

    So my experience with neurologists was not a good one but others here have obviously had a more positive experience, which is great!

    I wish you an all-good neurologist consultation!
    [This Message was Edited on 06/19/2008]