How do you get a REAL diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by albrn, Mar 20, 2006.

  1. albrn

    albrn New Member

    I'm sorry to bother you with this, but I don't know where else to turn! Two years ago my family was hit by a drunk driver and I have had to be "put back together" bi-lateral jaw surgery, bi-lateral knee surgery. I have neck and back problems that cannot be surgically repaired so I have nerve blocks every couple of months. Before the accident I was already feeling tired and sore all over - all the time. My primary physician did blood work, tested for thyroid disease, diabetes, anemia and I'm not sure what else. Then after the accident literally every part of my body except my feet and hands was X-rayed, CT scanned and/or MRI. For the numbness/tingling in my hands and feet they did a nerve conduction test. The thing is, nothing was found really wrong with me to explain the overall pain, confussion etc. that I am feeling. Finally one doctor suggested I have fibromyalgia and myofasial pain syndrome; only he said he could write it as a diagnosis. Then I went to the nerologist who agreed with the diagnosis, but again wouldn't write it. I also spoke with a neurophyschiratrist who also agreed, but didn't writhe the diaganosis. They sent me to a pain management doctor who also agrees I have fibromyalgia (the myofasial pain was writen as a diagnosis by this time) however, my pain doctor said that she couldn't write the diagnosis because it is more a diagnosis of "ruling out" other things. What other things are they looking for? My entire body has been examined! I've done a lot of research on the symptoms and bought a couple of books. There is no doubt in my mind I have this disease. Even the pain doctor acknowledges the pressure points and seems to realy care, but why, if they all agree and are telling me I have fibromyalgia will they not write down the diagnosis? If any of you have any ideas, or have gone through this before.......Please help me. What do I do now?

    Anyway, thanks for reading this. I would really appreciate any help or suggestions you have.

    Lynn
  2. jakeg

    jakeg New Member

    It could be possible they are not writing the diagnosis for fear of something else being found then being sued for malpractice. I fought with my docs for months to get them to put their dx in righting. also made an example of one of them because of the anticks he was pulling. Trying to get the specaillists that he referred me to forget their dx and go along with his.

    Finally I found a new rheumy for a second opinion who confirmed the original dx and put it in writing and after showing this to my original rheumy he finnally put it in writing after 6 months.

    All you can do is keep searching until you can find one who will. Just make sure you don't have a pcp like I did or you will never get it in righting he was the one who was screwing up all of my std benniffits and written dxs from the specaillists he refered me to

    Jake
  3. sydneysider

    sydneysider Member

    I got a written diagnosis from a Rheumatologist, although when I received it, it did not say all the things that I was originally told that it would say.

    This is my suggestion.......Ring some Rheumatologists, and specify to the secretary that you are looking for a Reumatologist who can give you a written FM diagnosis. Get them to check with the doctor, and contact you back. If neccessary, then get a referal from your regular doctor.

    When you go to the appointment be very clear about what you want, and why. If there is any argument point out that he/she had agreed to give you a written diagnosis, otherwise you would never of made the appointment.

    I also suggest waiting while the diagnoses is typed, and then paying.

    Be very firm, and don't be bothered if they make a fuss.
    Just stay focussed on what you want.

    Hope this is of some help.
    Best of luck....I know what it's like.
    Robyn.
  4. libra55

    libra55 New Member

    Like others on here I was diagnosed by a rheumatologist. I didn't have any problems getting diagnosed, I had 14 out of 18 points so it was pretty clear cut.

    It just took me a long time to get to the rheumy because I could not get a referral because every one thought it was all in my mind. But once I did get there it was very easy.

    Michelle
  5. albrn

    albrn New Member

    Thank you all so much; no I have not been to a rhumatolagist, but I will!!! I really appreciate each of you taking the time to help me.

    Lynn