Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 5, 2010.

  1. greatgran

    greatgran Member

    Has anyone seen a neurologist for cfs/fm ? I had a friend suggest I see a neurologist .

    If so were they helpful and is the type of doc I should be seeing as I still doubt my dx everyday.

  2. TigerLilea

    TigerLilea Active Member

    Yes, I did see a neurologist, and, no, he wasn't helpful. He didn't believe in CFS and said that it was clearly depression. I went in originally about nerve pain from a root canal.

  3. butterflydream

    butterflydream New Member

    Yes, sure i've seen neurologists for some related Fibromyalgia symptoms.
    I've seen 2 different neurologists.

    A neurologist can perform a nerve conduction test and by gosh i have more diagnosis from having the Neurologist appointment and tests.

    I was referred by another doctor to neurologist. You may not need to be referred such as for insurance purposes.

    So if you are for whatever reasons in doubt or would feel more comfortable seeing a neurologist, i would suggest go for it.

    i also suggest Always get your copies of Any and All tests you have. i cannot stress this enough. These are your tests and your results, please get the copies as they are Yours.

  4. tennisnut

    tennisnut New Member

    I have been toying with the same idea. Although each new doctor is such an investment in time/energy/expectations that I'm not always sure it's worth it.

    I have the name of a Neurologist who I know is interested in ME, so that's a major step. My big problems are mostly in the head - coping with noise, light, smell, talking until I feel my head will burst, I'm drained of energy and the only help is to lay down and be still and quiet.

    However, I do not feel happy with the fact that this visit may be accompanied by a plethora of tests, sometimes invasive, that's the problem.

    I do think I would benefit from help with "calming down" my brain, and surely that is the person to be able to help.

    My GP only does what I ask her, tests, etc - not any real help at all.

    I made the mistake of consulting a Immunologist and he said"I had no right to be here" (wasting his time). How's that for complete rejection?

    I would be interested in your reception if you proceed. Cheers TN

    [This Message was Edited on 01/06/2010]
  5. MsE

    MsE New Member

    If I ever have those weird pulsing sharp pains in my head again, I'll find a neurologist. That was scary!
  6. loto

    loto Member

    I was referred to a neurologist before I was diagnosed with FM. He ran a nerve conduction test, did an exam, and looked over my brain mri.
    After the "tender point" exam and ruling other things out, he diagnosed me with FM.
    After the initial diagnosis I went back to him for a check up a month after, and when I asked/told him about other new symptoms I was having (all related to FM), he told me to see my family doctor for them. Then he told me to come back to him in 3 months for another check up.
    Well, I didn't go back in 3 mos. I figured since he told me to see my family doctor for stuff I wasn't going to waste my time and money seeing him!!!!
    So, he helped me by giving me a diagnosis, but after that he wasn't worth a &#*$.

  7. Janalynn

    Janalynn New Member

    What kind of Dr.(s) have you seen so far? Who diagnosed you?
    Are you doubting you have CFS? or thinking you have more going on? Gosh, I still doubt sometimes. For me, I think it's an acceptance thing. Who knows.

    My story is a little different, but when I found a new Dr. and went through my history, she immediately suspected Fibro and sent me to a Rheumatologist. She just started asking me questions (really no idea where she was going) and I pretty much answered "yes" to every question. I had been living with pain and the other symptoms for almost 20 years but really thought my pain was just the way I was. My former Dr. had already given my pain medication to help me through some of the rougher times.

    The rheumatologist confirmed her suspicions. However, this Dr. doesn't treat Fibro, just diagnoses, so my reg. Dr. "treated" me. Since then, I have found another rheumatologist in another city who is very knowledgable about Fibro so I'm seeing him. My Dr. will continue whatever he recommends, but he will manage my care. He's just not convenience to drive to on a regular basis.

    Have you been diagnosed with FM? Have you seen a rheumatologist yet? You can always call an office and see if they diagnose FM. You don't have to tell them who you are, you just want to get a feeling for them. If they know about FM, they should know about CFIDS.

    Good Luck!