Is it worth going from dr to dr? What should I do

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by _randy_, Jun 24, 2007.

  1. _randy_

    _randy_ New Member

    I have gone to many doctors...several primary care physicians, infectious disease specialists, a neurologist, an autoimmune specialist...etc with absolutely no positive results.

    Should I continue on anyways, as a trial & error approach? Or would that be wasting my time and energy.

    Also, if I were to continue the trial & error going from dr to dr, what type of doctor would I have the best chance with? Infectious disease specialists seem to be the wrong route, haven't had ANY luck with them. They test my EBV antibody levels, I come back for a follow-up where they say it's high, then they tell me just because it's high that doesn't mean anything. I'm really starting to wonder 1) why there's a test in the first place and 2) why do they administer it, if the results are so insignificant.
  2. flossyfudleFran

    flossyfudleFran New Member

    hi all,
    randy,i dont think you should keep going from dr to dr.

    i changed doctors three times,twice last year,and once this year.

    this current doctor is ok,but i always start the conversation as...

    ive not come about my fibro/M.E. so dont panic...then ill tell her about whatever is making me ill.like lately its been nose problems.easy stuff like that.

    i think something has been written on my medical reports,that indicates mental illness.so thats why im not taken seriously by anyone.

    i went to view my hospital medical reports in hopes of winning my dissability appeal a few years ago.

    lots of the reports where missing for the years 1990-95.

    this being the time period when M.E struck me.

    but they made sure that they left the page that had SOMATISATION DISSORDER,on it.

    i read about this on the internet,and couldnt believe that id been labelled with that title.

    its a mental illness issue.

    now on my amitripyline leaflet,it says,

    amitripyline will give a bad reaction to sufferers of manic depression.

    i myself feel a comfort in knowing this,as my amitriptyline,has worked for me for 13 years now.so im of sound mind.thats what the amitripyline leaflet suggests isnt it?

    so therefore,i know i dont have manic depression.thats great isnt it.

    but because a mental illness label,is on my medical records,no doctor takes my fibromyalgia and M.E/chronic fatigue syndrome,seriously.

    so changing doctors,wont nessesaryly get you better understood,or a treatment that works for you.

    we need someone who will take this illness seriously,and not think we are mental.

    i was a normal/happy person.then something struck my body,and you know the rest.

    why are my nerve endings dying?.i was in my early 30s,when it first started happening to me,what caused it?

    not just depression,its something more,i just feel it.

    kind regards

    fran
  3. lena22

    lena22 New Member


    It does seem like a waste of time and energy, and ironically, we have no energy we can afford to waste!
    But it seems like a lot of us have gone from doctor to doctor like you have before finding somone who at least somewhat understands.

    It doesnt matter that much what kind of doc it is, as long as they have
    experience with and are understanding about cfs/fm.

    My best doc was a PCdoc, but she closed her practice. Much more
    helpful than the Rheum, or Pain doc .

    I would suggest maybe looking on the doc list on this site
    (I cant remember where it is - somone told me once, sorry)
    or making a post on here about where you are located and others
    from your area might know a good doc.

    Also, just my 2 cents - I did everything natural for 6 years,
    acupuncture, Naturopath, massage, bodywork, enerrrgy healing,
    herbs ' clearings' , tons of supplements , and I didnt get
    any help from it and spent a LOT of money and am now in debt
    from it.
    ( I had the same deal with tests (paid for out of pocket, that
    she said I needed to have done) from my naturopath as
    you did ' oh well , you have this and such result, but I dont know how
    to treat that, or its not treatable...' so we tested it why? )

    Everyone is different, though, and if you can afford it, or your
    Insurance covers it, I would say it cant hurt to try a ND, and it might help
    you.
    Make sure they have experience with CFS/FM though - thats
    really important .
    Good Luck!

  4. Lendy5

    Lendy5 New Member

    Hi randy - I completely understand because I have gone through so many doctors I lost count. Have you tried a pain specialist in or around your area?

    There was a helpful post last week about writing to local doctors ahead of time to see if they would be willing to take on a FM/CFS patient. I haven't tried this method yet but I have found calling ahead of time to interview has helped me the most. I explain what I have and list my current meds and this has allowed me to find out if my meds will be prescribed without me wasting the money first.

    I avoid family physicians when I can and have had good luck with these;

    D.O. (Doctor's of Ostheopathy)
    Rheumatologist
    Psychiatrist
    Independant Pain Specialist

    The Good Doctor list is above the page in the purple tabs Doctor Referral) and it allows you to search listed doctors in your state.

    Good Luck!
  5. NyroFan

    NyroFan New Member

    randy:

    I usually rely on a rheumy. They seem to have more experience in treating our diseases.

    As for doctor to doctor, I have had to do this many times before. I think it is worth the chance. And I would ask for blood results and compare them.

    nyrofan
  6. dswanteck

    dswanteck New Member

    I wasted a lot of time and money on in-network doctors and specialists. I even ran into a deadend with some CFS/FM support group recommended doctors (the doctor on the list had practically retired and the new doctors didn't believe in it). You need a CFS/FM specialist. They usually don't accept insurance or Medicare. The only one I know who does is Dr. Susan Levine in New York City (Allergist, Immunologist, INternist) as of now she is in network for Blue Cross/Blue Shield. Dr. Charles Lapp in NC is very good, he does not accept insurance but will give you the paperwork to file. Usually an evaluation is about $650 plus labs. They will rule out CFS/FM if that is not what you have. These tests are also very helpful in getting disability insurance. Dr. Podell in NJ is also good. I have never gone to him but his prices are about the same and he does not take insurance. I have heard good things about him. One complementary MD, found a high level of mercury in me and this helped with allergies a lot but did not cure my CFS/FM. It really doesn't matter what a doctor's specialty is if they do not take your illness seriously. Most doctor's won't unless they can see major abnormalities in your blood. So far CFS lacks this type of test. The doctors who have a special interest in CFS/FM will help you with your symptoms,(pain,sleep, cognitive dsyfuntcion. I know it is a lot of money and perhaps travel, but you will undoubtedbly sped this or more trtying to get well, or just get by in the long run (I know that I did--I wasted seven years!) Except for Sue Levine who does take insurance and Medicare.
  7. mdjaj2231

    mdjaj2231 New Member

    I know how you feel, but you need to get better. Maybe take a week or two off and then ask on the message board for recommendations for someone near you. I was actually at a very nice allergist for horrible sinus problems, and he mentioned this neurologist I just started going to.

    Right before I signed on now, I just finished telling my husband how nice it is to have a dr. who cares and tries to help. I did ask if he treats fibro/cfs before I went b/c I didn't want to waste my time.

    I also use a chiropractor and have acupuncture.

    Hang in there. You're not alone.

    M
  8. jole

    jole Member

    The reason I say this is if you have not been diagnosed yet, you need to be. If it gets so bad somewhere down the road that you need to apply for disability, you HAVE to have a doctor treating you that believes in your dx and that you can no longer work.

    This is the only reason I keep going, and it may pay off because I had to quit working in September due to the pain, fatigue and brain fog. Just could not do it any more. You need verification in order to file for disability.

    Each of us is different. What works for one will not necessarily work for the next. Yes, it is trial and error, but you really need someone standing beside you. I have a good rheumatologist who believes in me....a lot of people have not found them helpful, so again....each is different, and it took me about 9 docs to find this one.

    Best of luck to you!
  9. _randy_

    _randy_ New Member

    Thanks so much to everyone for your replies. I've thought about forgetting the whole chronic fatigue/EBV discussion and just telling the doctor my symptoms and see what he says. I had never had allergies in the past, but I think that's an area I'll start looking into more. Thanks!
  10. yellowstrawberry

    yellowstrawberry New Member

    I have been doctored out many times. Part of figuring out if you have ME,CFS,orFMS is by doing all the testing to rule out anything else. I personally think first going to an immunologist and insisting on a complete rulling out of other immune deficiency diseases or disorders. I think my next stop would be a neurologist again take your health into your own hands and ask for complete rulling out of other diseases. Then rheumotologist,and allergist. Be sure to get copies of all your records and keep them with you. This is helpful to use as a guideline and also so you are not repeating test. PLEASE do not do what I did! I got so frustrated and decided I was finished with all doctor, reports and the whole business of this so called illness and I threw everything away. Thank God I recieved Social Security before this crazy move! Never Give Up!
  11. jake123

    jake123 New Member

    My ob-gyn told me yesterday to get a PCP. I told him I had fired my last one. I have a neurologist for my migraines and a psychiatrist I have seen since 1999 for sleep problems.

    I will try to get another PCP but it is so tedious to explain everything and risk having them think you are screwy because of the meds you are taking, etc.

    I think my old rheumy and my last PCP were telephone friends or something, just a intuitive feeling I got from what they said individually. I quit both of them. They can get rich quick on someone else :~)

    Sooooo, randy I understand what you are saying. Should you mention the test or the FM or not? Same here.
  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I was very close to going to a nature person, but tried one more.

    The gyno said he thought I had CFS or Fibro, but he doesn't treat it. He sent me to a rheumatologist. Who wasn't taking new patients.

    Went to get test to eliminate other things at Internist. He said, "Ma'am, you have depression." I knew I didn't. I know the difference. I asked him directly, "Do you recognize CFS or Fibromyalgia as organic illnesses?" His answer is no. They are different kinds of depression. But he did find low thyroid levels.

    Went to Endocrinologist, who upped my dosage. That made me worse, I was over medicated.

    Then the endo says, "I think you have CFS or FM. Go to this rheumatologist."

    I went. She did a half-hearted fibromyalgia test. Said I didn't have it. Then I asked, "What about CFS?" She said, "Oh, I don't treat that."

    I called other doctors I heard treat it. Their nurses told me they don't. Talked to people I tracked down who have it to ask who their doctor is. They all said they aren't happy with their doctor.

    I ended up traveling four hours to a city that has a clinic that specializes in it. I am glad I kept looking. The thorough blood work proved to my husband what my biological problems are. They helped me to understand my own illness. This doctor approaches from supplements, western meds and lifestyle changes. I feel it is my best hope, but it will take time. Oh, and this doctor is not in my network, but I am filing for an exception since I couldn't find a doctor to treat my CFS in my city or in network.

    I recommend you call doctors before making appointment and ask them if they treat, diagnose or can eliminate CFS and / or Fibromyalgia. If they say no, then they don't want you as a patient, so you wouldn't want them as your doctor. Also, be careful, some doctors recognize and treat Fibromyalgia, but don't treat or recognize CFS.

    I would try neurologists and immunologists, and maybe a sleep doctor.

    Tina
  13. Catseye

    Catseye New Member

    If you waste time and money on regular doctors, you won't be able to get what you really need. Study what supplements you need here and try to find a naturopath to guide you. Regular doctors can only sell drugs to help you and that's exactly what we don't need. Our livers are struggling to make the chemicals we need and there are no drugs to address nutritional deficiencies.

    Chiropractors can help regardless if you have pain or not. I still see one every 2 weeks. Acupressurists can help, too. Try to find good ones of these types of health specialists, they are interested in and know about health, not just selling useless drugs.

    And like the hypoglycemic test, tests can be useless. I asked them what the treatment was before I went through what would be an agonizing test to raise my blood sugar to record levels. They said all you can do is eat a hypoglycemic diet. Well, then, what the heck do I need the test for if I already know I'm hypoglycemic and there's no real treatment for it other than the obvious hypoglycemic diet which I'm already doing? Then I get a stone cold, angry, blank stare for daring to ask such a question.

    I'm recovering from what I got on the net after wasting thousands of dollars and lots of time on doctors. All it did was make me worse. Now I have a good bit of liver damage because I depended on those idiots instead of myself.

    In a nutshell, what you need is liver support, possibly adrenal gland support, bioactive forms of B vitamins, the methylation protocol and easily absorbable forms of all vitamins, minerals and free form amino acids.

    good luck!

    karen
  14. pepsismybaby

    pepsismybaby New Member

    Hi Randy. I share your concern and frustration. Not only do we expend a lot of energy (which we have very little of) but lots of $$$ as well (I am on limited income due to my illness) and I feel like a guinea pig (all the different prescriptions). It took years to get the FMS DX!!! You are not alone hun. I think we all experience this.