Doctor Specialties most helpful to obtain CFS diagnoses

Discussion in 'Fibromyalgia Main Forum' started by LongStruggle, Dec 9, 2006.

  1. LongStruggle

    LongStruggle Guest

    For those of you who have been formally diagnosed with CFS, what type of doctor diagnosed you or have provided the most help and support? I find that most doctors don't want to acknowledge this diagnosis or are not interested in helping you cope with it -- they just leave you with no answers or solutions. I'm interested in how others have gotten the support they have needed in dealing with CFS and dysautomias. Your help will be most appreciative.
  2. jole

    jole Member

    I saw this at the bottom of the page and at least want to bump it up for you. I was first sent by my PCP to a neurologist who diagnosed me. I then went to a rheumatologist, who confirmed that diagnosis.

    Most primary care physicians don't want to diagnose you, it seems. They would rather send you on to a specialist, generally a neurologist, for the diagnosis.

    It is very hard to find someone willing to take on your care and be sincere with treating you, as we have all found. They may say they have experience in this area, but you soon find out that you know more than they do. That's why this board has been such a blessing to many of us.

    Friends - Jole
  3. LongStruggle

    LongStruggle Guest

    I feel exactly the way you do. My doctor of 7 years whom I've just fired, always just sends me to a specialist and then the specialist never wants to deal with anything. And that's exactly what I've been hoping to do is find a doctor who knows more than me. It is so frustrating. You at least got diagnosed. I'm concerned with the way things have been since mid-September (unable to work) that I need a doctor behind me in case I need to file for disability.

    How does a neurologist help with diagnosis? The only symptoms I have are brain fog and chronic headaches. My brain fog has improved, however, with B-12.
    Does a neurologist also help with orthostatic problems, dysautomias or whatever they are that I have. I'm seeing an electrical physiologist for the 1st time this Wednesday and hoping he will be helpful in terms of diagnosis and treating symptoms.
    [This Message was Edited on 12/09/2006]
  4. adberens

    adberens New Member

    After going to several doctors my infectous disease doctor dx and treated me for several years for CFS. I was very satisfied with him as a doctor but I moved away from Atlanta and now am in Richmond. I am being treated by a PCP. I miss my old doctor.
  5. LongStruggle

    LongStruggle Guest

    Did you actually have an Infectious Disease or do Infectious Disease doctors typically identify and treat CFS?
  6. adberens

    adberens New Member

    My doctor in Atlanta was an Infectous Disease Doctor that specialized in CFS and AIDS.
  7. Slayadragon

    Slayadragon New Member

    Very early on, within a year of coming down with the drop-dead flu, I went to my internist for something else. This was 1996. I told him that I believed I had CFS and described the symptoms. He said, it sounds like that's what you have, would you like some Ritalin? I said, no, not for now. He said fine.

    He's actually a good internist with an excellent reputation in the medical community. He's not been able to fix many of my bizarre problems since I got sick, but that's not his fault since my body is weird. I had been seeing him for 10 years before I got sick, and he always did an excellent job with me before then.

    I don't think any of the doctors who have helped me even a smidgeon have ever even _mentioned_ the term "CFS." I've sought out people who are extremely highly knowledgeable, and they don't like that term because it doesn't help them to figure out what's wrong and then fix it. Instead they will talk about "addressing your candida problem" or "looking at your hormone panel" or "testing for immune problems" or "checking to see if you have any heavy metal toxicity." These are all key elements of CFS, but the diagnosis of CFS is irrelevant to how they come out or the treatments that are used.

    Oh, yes, I do have one doctor who has an interest in CFS who I see on occasion. He knows all about "the disease" but thus far has yet to do anything to help because there aren't any accepted treatments. (Also, admittedly, because I've already tried pretty much everything there is for it.) So I guess he's given me a diagnosis too. But that's been really recently.

    Just curious.....if you know your doctor's not going to be able to help you with your CFS, why is it so important to have him/her "diagnosis" it?

    [This Message was Edited on 12/09/2006]
  8. LongStruggle

    LongStruggle Guest

    I'm wanting a doctor to officially diagnose because since mid-September I have not been able to work and I may need to file for disability. It will be impossible to get disability unless a doctor is advocating for you. It is doubtful that my chiropractor/kinesiologist will be considered powerful enough by judges to diagnose CFS when I don't have much FM symptoms.

    Additionally, some of my symptoms i.e. severe pounding palpitations and dysautonomic symptoms may need actual MD treatment and not just supplements. My palpitations are unbearable at present.
  9. LongStruggle

    LongStruggle Guest

    What exactly is an environmental medicine doctor? Are there very many of those around?
  10. ktpar

    ktpar New Member

    A rhematologist diagnosed me in Nov. I have been seeing my PCM since Mar. He thinks that I am crazy or something. He did say I suffered from some kind of pain disorder and sent me to a few specialist. It seems like my Rhemy is lazy or something. She comes in a do a physical exam. She will not prescribe pain medicine. My Pain Specialist is good with treating my symptoms.
  11. LongStruggle

    LongStruggle Guest

    I just went in to see your bio and found that you live in Skokie, IL. I'm originally from Chicago. My cousin is a kinesiologist/chiropractor in your area. She has been practicing for years. If you are in need of gaining knowledge whether certain supplements are or are not beneficial for you, you might want to see her. Let me know, I can give you her phone #. She also has just graduated from medical school and is studying for her boards.
    [This Message was Edited on 12/09/2006]
  12. Clay2

    Clay2 New Member

    Has anyone had any luck with Endo's?

    My Internal Med doc diagnosed me, but told me to go home and get a job, and keep my attitude up. Thanks.
  13. LongStruggle

    LongStruggle Guest

    Ah yes, the doctor who has no bedside manner. I can't believe some of the statements doctors say to their patients.

    I have seen many endocrinologists over the years as I am also hypothyroid. With all of my complaints with fatigue, I have not yet got anybody to really help with the thyroid problem let alone identify CFS. I have been more knowledgeable of CFS than any endocrinologist I have seen. I'm trying to determine right now whether I'm going to try and pursue an internist or an endocrinologist for my hypothyroidism.
    [This Message was Edited on 12/09/2006]
  14. LongStruggle

    LongStruggle Guest

    Thanks for the info on the environmental medicine doctor. I'll have to see if there is anyone anywhere near me.
  15. cct

    cct Member

    My Primary Care Physcian, who is an internist, determined my CFS diagnosis in 1990.

    He sent me to a CFS specialist who was useless.

    Then I found another general medicine doctor who specialized in fibromyalgia. He was my CFS/FM doctor until the beginning of this year (He closed his practice). He was very helpful and understanding.

    Several of my CFS friends (from our support group) work with environmental illness specialists and/or intagrative medicine doctors. A few people prefer to employ a team of specialists (neurologist, cardiologist, endocrinologist, rheumatologist, etc.)to help them cope with each set of symptoms.

  16. LongStruggle

    LongStruggle Guest

    Thank you for your input. The info was very helpful. I wish it was easier for all of us to get the help we need. Unfortunately, there are too many doctors who don't appear to care what their patients are going thru.
  17. Roseblossom

    Roseblossom Member

    I have CFS too.

    I only needed a doctor to get a disability parking tag, and a diagnoses for when I apply for disability assistance.

    So I just called some general practitioners in my area and asked on the phone if they were familiar with CFS/CFIDS/ME.

    I found one :)

    I also printed the CFS Toolkit found on the Centers for Disease Control (CDC) website, and mailed it to him.


  18. LongStruggle

    LongStruggle Guest

    That's helpful. I thought about calling doctors, but often support staff aren't good in answering questions. However, if you have had success then possibly I'll be able to find success with that method. Thanks again.
    [This Message was Edited on 12/10/2006]
  19. Roseblossom

    Roseblossom Member

    I know what you mean about getting answers to questions. bleh.

    So I kept it to one single question - "Is doctor __________ familiar with Chronic Fatigue Syndrome (CFS)."

    If she/he is familiar with it, you'll be able to get the tests recommended in the CFS Toolkit which will get you a diagnoses.

    Good luck :)


  20. balletdancer74

    balletdancer74 New Member


    It was actually an infectious diseases specialist of HIV/AIDS who diagnosed me, but he didn't treat it. So, he sent me to a CFIDS/M.E. specialist.

    Immunologists, general practitioners, Infectious diseases specialists, neurologists (more FM), rheumies (more FM but also CFIDS/M.E.) are the docs who usually diagnose or treat CFIDS/M.E.

    I have a host of specialists...thank goodness! lol

    Hope you find some help soon!

    LB32 (Leeza)

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