Neurologist won't dx me with CFIDS because...

Discussion in 'Fibromyalgia Main Forum' started by NightAngel, Mar 2, 2003.

  1. NightAngel

    NightAngel New Member

    Here is my story. I have FMS- was dx'd back in 89. I've had a lot of problems besides the FMS and was just recently dx'd with Polyneuropathy. All the various blood work I've had has come back normal and my MRI (of brain and part of spine) was normal. I have Optic Neuritis (dating all the way back to 89) and so we were checking for MS amongst other things. My neurologist has been a little confused as to what is going on with me, so he sent me to another neurologist in Temple Texas (I am in Bryan/College Station) and I just saw him this last Monday.

    I asked him if he thought I could have CFIDS, as I have had every single one of the symptoms since I got sick in the late 80's. His reply was "Well, you *could* have it, but there wouldn't be any benefit in diagnosing you as having it, because there are no effective treatments for it." He said a bunch of other things about CFIDS, which I can't remember verbatum, but the gist was that he seemed to be kinda poo-pooing CFIDS.

    I was T-totally shocked to hear him say this. What does it matter if there are "effective" treatments or not? If I have it, shouldn't I know that I have it if for no other reason, to give me peace of mind so I feel some validation for my strange symptoms?

    The neurologist I see here in my town is the ONLY neuro here with my insurance (Scott & White) and he dosen't even know hardly anything about CFIDS. The neurologist he refered me to in Temple works with other neurologists there and I guess I could ask to see one of them but I'm afraid since they're in the same hallway and work closely together that they're all buddy-buddy and if the neuro says something negative about me to the other dr's he works with, then I'd be wasting my time. Oh, he did mention that there is another neuro there that works with CFIDS patients but I felt that his attitude was that he thought it was a waste of time to bother with looking into it.

    Should I ask my PCP to refer me to a Rhematologist? Would they know more about CFIDS than a Neurologist?

    Well, I guess this is all I'll write for now. I could go on and on LOL
    [This Message was Edited on 03/03/2003]
  2. Bellesmom

    Bellesmom New Member

    I tried to make an appt with a rheumy that my PCP referred me to and they said they'd see me one time but she didn't treat FMS or CFIDS so why bother to go? There are so few doctors seriously specializing in treating these things that you must check them out before they check you out and say things like your neurologist did.

    They just don't generally seem to know a lot about the things "we" have but judging from some of the postings I read here just in the last 2 days there is so much info and research popping up on our problems that you'd think the doctors would read about it if they're not too busy to stay up to date.

    Best of luck - you have been at it a very long time.

  3. NightAngel

    NightAngel New Member

    That's a good idea- find out ahead of time if they even treat FMS and CFIDS.

    I appreciate your good advice, and good luck to you, too! :)

  4. NightAngel

    NightAngel New Member

    I'd love to hear more from you all- Any ideas? Suggestions? Comments?
  5. Mikie

    Mikie Moderator

    My own rheumy is only really interested in the FMS part of my illness. My PCP and I work together to treat my CFS. I have an appt. with a psysiatrist later in the month. He sounds very knowledgeable about both FMS/CFS. My doc and I just want to be sure we're not missing something in my treatment.

    Love, Mikie
  6. Sandyz

    Sandyz New Member

    This must be so frustrating for you. I had several doctors years ago that just kind of scuffed at the idea, when I said could I have Fm. Then a year later one of the doctors finally diagnosed me with it. I guess he finally learned more about it. It gets to the point where you just want to know what you have, what`s going on. Your relieved when you finally get diagnosed. It took 3 years for the docs to finally figure out I had Fm.

    I think you should go to another doctor. I think what he said was very strange and of no help to you. You have to live with this crap, he doesn`t. Have him refer you to the reumy or go to somebody else. For your own sanity you need to know what you have.

    I wish you all the best. Chronic Fatigue/Fibromyalgia are such cruel, brutal illnesses to have. We need some understanding from doctors and people in general and we don`t get it and it`s not right.