Rheumatologist or Neorologist?

Discussion in 'Fibromyalgia Main Forum' started by Flaxen, Oct 6, 2005.

  1. Flaxen

    Flaxen New Member

    I just saw a R-Gist and am wondering if seeing a neorologist is necessary? The symptoms are both.....$$$$$$$...they do not take medicaid.
  2. elsa

    elsa New Member

    I don't think the doctor's specialty really matters when it comes to treating CFS/FM. I think it is more important to look for someone who is knowledgable and interested in treating these illnesses.

    What I did was figure out what treatment plan best fit my situation, goals, functionality and desired quality of life.

    I researched like the devil and then made my plan.

    I was truly blessed however from the start with an excellent PCP who is very up to date and open-minded in the care of CFS/FM. .... So I kept him on the team.

    Next, I wanted a sleep specialist as we all have disordered sleep. Found a good one who deals with CFS/FM all the time ... as you can imagine. Even before the test he was telling me about possible meds and giving me brouchers on their treatment w/ CFS/FM. He made the team too.

    Looked for and found a Natural Health doc .. for nutritional deficiencies and amino acid therapy ... good stuff. He's a keeper.

    The last piece of the puzzle was a doctor well versed in CFS/FM hormone issues. I wanted one who was open-minded, treated with bio-identical hormones,specializes in anti-aging medicine. Found him ... I have to travel to see him but I don't care. He gets, for example, that CFS/FM patients often may have normal thyroid tests but still suffer from hypothyroidism.

    My point here is I took all four systems that are known to be affected by CFS/FM ... decided how best I wanted those 4 systems treated ( after serious research )and went out and found the 4 docs I wanted to treat those systems. I basically went shopping for my CFS/FM team.

    None are rheum. or neurologists. One is an internist, one an og/gyn and board certified anti-aging specialist, one a pulminary specialist and last one is a GP as well as a ND.

    I wouldn't have turned down a rheum. or neuro. doctor if they fit into my plan. I think in these illnesses it is more important that the doctor is interested in and agressively treats CFS/FM then what specialty field they are in.

    I am too independent and too self educated about how I want my treatmewnt to go to follow the flow.

    This maybe way more then you wanted to know. My point was you can go to any kind of doc you want as long as they accomplish what you want and know how to treat these illnesses.

    Take care,


    I did have a head-shot MRI and ultra sound of blood vessels and arteries in neck that feeds brain, etc during my diagnostic phase ... after everything looked good, that was the last I saw of vascular and neuro docs.. I actually never saw them ... "showed up for tests and results were sent back to PCP. Works for me ... never had to deal with new patient forms or do an office visit, etc.

    [This Message was Edited on 10/07/2005]
    [This Message was Edited on 10/07/2005]
  3. jake123

    jake123 New Member

    Hi Flaxen, I think Elsa has given you some good advice. Did the Rgist validate your illness and have a plan for treatment? If not then forget it. I've been going to one for three years. I waited 9 months to get to see him and I don't think he has ever actually done one thing for me. I decided a couple of months ago not to see him anymore.
  4. elsa

    elsa New Member

    Bump for Flaxen to read ....
  5. JLH

    JLH New Member


    What did the Rheumy have to say? You may not need to see a Neurologist.

  6. springrose22

    springrose22 New Member

    I agree with Elsa, the specialty doesn't matter, it is the amount of interest, that a dr. has in a disease that will be most helpful. So far, I have been sent to 2 rheumatologists, and both of them knew far less about CFS than I do, and neither one seemed interested in how ill I really am, and both said that there was no treatment whatsover. My own family dr. seems empathetic at least!! Elsa, I have done tons of research so far, and once I get a wee bit better, I will follow your plan of finding a team. Right now, I am barely able to take care of myself. Marie
  7. elsa

    elsa New Member

    Just saw your response. I understand about feeling so weak as not to have the "juice" to put together a team of docs.

    I basically decided last January that I was going to get some answers and help with this. The internet has been a wonderful resource.

    I read so much about the different systems that crash with CFS/FM from the experts ... and then read about the problems most MD's have in correcting some of these problems. The hormone HPA axis really stands out here.

    It seemed to me that Anti-Aging doctors are the most current with hormone treatment and understand that with fibro the tests are not going to give the true story and treat accordingly. So often, docs that use bio-identical hormones understand how to help CFS/FM HPA axis problems.

    I'm taking a very long time to tell you that the internet helped greatly in putting together "my team". I'd google the system I wanted to know about and follow the "paper trail".

    It took along time because I didn't have what it took to finish up in a decent time frame. Sometimes I'd get so frustrated that I had to do this myself and would whine about not having someone do this for me.

    "I'm sick ... can't ya'll see that? Why doesn't someone else do this and just TELL me what to do!!" Quite the temper tantrum. LOL 'Course, I wouldn't have educated myself and been able to direct the docs in how I wanted to go about things. LOL

    If you can, just do alittle at a time, one body system at a time. Use the internet and search engines to decide how you want to treat each system and also use it to find a specialist around you to help.

    Somedays I just couldn't get it together enough to work on this. (That's what I called it too ... if my husband called home to check on me, I'd tell him I was in my office working on my CFS/FM project.) Those were some frustrating times.

    I have known for a long time what direction I wanted to go in for hormone treatment ... did get some interim help, but just two weeks ago had my first appt with the specialist doc I "picked" out. Sept.26th is a long time away from last January when I started.

    You mentioned that your PCP was at least empathetic to you. Maybe he can help with the sleep specialist.( If you don't already have one ... and sleep study.)

    I hope I haven't overstepped my bounds. I just wanted to tell you how much I understood how you are feeling. It was a hard decision to give away so much time and my precious energy to map out my plan.

    I remarked to my husband just the other day that I couldn't believe it was October already .... that I had "lost" an entire year to this illness. He set me straight quick enough. I hadn't lost anything ... I worked to get what I wanted from healthcare professionals ... And now I am in early remission and starting the last phase of my plan.

    I was diagnosed two years ago this month. Spent the first year in stunned shock ... and fought to keep going. Had enough of that last January and the rest as they say is history.

    Luck played a hand as well though. I could not have accomplished what I have without the wonderful, open-minded PCP doc on my side. He started me on anti-virals immediately and kept me on them for a year.

    He also trusted me throughout to make the right decisions. Most of what I refer to as my "maintainance" rx'es came about due to my research and request to try them. That man has been a god-send to me.

    I wish you luck in this. It was invaluable to me and horribly time consuming, but oh, so worth it. I can sit across from a doc now and say "yes" or "no" and keep him on the track that I want to go on. Remission is possible.

    I'd like to help you if I can in anyway. This board was worth more then gold to me while I was putting it all together and I'd like to pass it on. Maybe I ought to start a thread on this? Maybe not, ... I don't want to be pushy as if I found the cure or something, LOL!

    Take care and I hope you feel better soon.


  8. springrose22

    springrose22 New Member

    Thank you. You are not being at all pushy, very helpful, in fact. I do my research very slowly, that's just the way it is... I am actually accepting this DD and know that the best I can hope for is remission. And, like you, I always, "can't everybody see that I am very sick??" If I could feel at least as good as I did in July, I would be ecstatic. The last two weeks, I have been getting worse and worse. I pray for remission. Thanks for your help. Marie

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