HOW LONG DID EVERYONE ELSE HAVE TO WAIT 4 DIAGNOSIS

Discussion in 'Fibromyalgia Main Forum' started by dizzidally, Dec 4, 2005.

  1. dizzidally

    dizzidally New Member

    I posted last week and mentioned that the rheumy had not given me a definite diagnosis, but was sending me for physio. I saw rheumy on 26th October. He wrote to my doctor saying it could possibly be CFS/ME, though he didn't examine me, apart from bending my knees and elbows. Today I have just received another appointment to see him, but not untill June 2006!!!!!!!!!
    I'm getting really exasperated. Work is on my back, and even ringing my doctor for a definite dx, as my doctor keeps putting cervicalgia (pain in the neck,and shoulders!!!!!!!!!)on my sick note(as that was where the excruciating pain started) and she says she will have to keep putting that untill I get a dx. Now, who is a pain in the neck!!!!!!!! I told the doctor the pain was now all over not just in my neck, so what do you call that????? Also, it my formal interigation at work tomorrow.
    Kate
  2. halfpint49

    halfpint49 New Member

    myself it took years to find out what the problem was, i was looked at and treated like a hypcondriac. i always felt worse afer leaving the office. now i am being helped with the best doc in findlay ohio. he gives me steriod shots to relieve the pain and believe me they are the best. but of course it would help if someone could tell me how to keep stress out of my life. lol i hope you hear what you need to hear and soon!
  3. jakeg

    jakeg New Member

    I was diagnosed with FM after 2 months by my rheumy and also a neurologist. The problem that I've been having is with my family doctor who referred me to the rheumy and neurologist. My family doctor has convinced both specialists that their diag is wrong and that it is depression (somatic conversion) is what he calls it. I requested a referral to a psychologist saying that if you think this is depression related why have you not made this referral as you have made numerous referrals to all kinds of specialists already. Keeps insisting that I take antidepressant meds all the time. His reasoning is that he tells me he believes the rheumy and neuro guy and that depression is not his daig, which I know is untrue. I have requested copies of my records, and his diag is depression with anxiety/somatic conversion. I went to a psychologist and have proved to him it is not depression and that I will be moving to new doctors both family and rheumy. New rheumy because he refuses to document his diag for my disability ins. Hope you have better luck than I have had so far.
  4. MamaDove

    MamaDove New Member

    My symptoms STARTED in 1993, worsened in 1994, therapies til 1996 all the while never concluding anything other than "It's all in your head" and "exercise" and "you need coping skills" and "you need to stay away from stress"...
    I did meet up with a brilliant physiatrist who told me his opinion was that my final diagnosis would be FMS/CF and it would be a lifetime battle...He also told me the docs around here have their head in the sand and will never go along with it...He was right, they didn't!
    This was in Maine...the land of OZ...
    I then went back home to NY and still had the same complaints and went to a dozen specialists there all of which actually laughed when I mentioned Dr.Ahmed's diagnosis of FMS/CF...Did all kinds of tests, still nothing...
    After 3 years down there, I moved back up to Maine (now someone should have known I was either sick or nuts for doing that)and after 5 years more I was sent by my gastroenterologist (of all people) to a new rheumy in the area claiming he was newly graduated and would figure it out.
    He immediately did tests noone had done before ruling out all the other things it could be and of course did the tender point test and determined what Dr.Ahmed said all along...FMS/CF...along with all of my other illnesses, I finally had a diagnosis that meant absolutely nothing...YAY!
    I cried when he told me his final opinion cause it is so vague but we are getting alot more info on this in the last 2 years, esp. that post by CEILI about mycoplasma...
    Seems to me this may be the reason we are told all the crap for so long...
    When we find the truth, we should collect all our receipts and go to all the docs, pharmacists, therapists, etc and demand a refund!!!!
    Funny, noone knows where this comes from, there is no known cure but everyone seems to offer help...
    After 12 years, I no longer go to docs period!!! I am done!
    Boy, I went on another rant...Great thing about these boards, you get to vent and if noone wants to read, they don't have to...
    For me it's been a long road that leads nowhere, just in pain and suffering all day every day with all these symptoms and no answers ever yet we still need to find a way to smile...That has been the hardest thing for me...
    Keep on smiling everyone, we will get there...together!
  5. justjanelle

    justjanelle New Member

    I wish my doctors had been as "quick"!

    I started having symptoms in 1994, and must have seen a dozen doctors over the years before finally being diagnosed with FM in 2003.

    Yes -- 9 years. But I've read of others here who have had an even worse time getting a diagnosis.

    What's worst is not that the doctors can't figure it out. Although that's bad enough. What's worst is that they try to convince you that you're a hypochondriac JUST BECAUSE THEY CAN'T FIGURE IT OUT!

    Best wishes,
    Janelle
  6. dizzidally

    dizzidally New Member

    Looking back I think my symptoms started 3/4 yrs ago. I had been to see the same rheumy just over 3 yrs ago that I saw in October this year, with fatigue, painfull hands, hips etc. He did the routine tests, all normal, couldn't figure me out, so I was just dismissed. He probably thinks I'm a hypercondriac too. So not seeing me until June 2006 he is probably hoping I'll go away like before, but now things have progressed and to the point I haven't been able to be at work, I live in hope he'll finally take notice with the help of my family doctor, who does believe in me.
    kate
  7. Sandyz

    Sandyz New Member

    I got diagnosed 15 years ago and it took about 3 years. I had been having mild fm symptoms before that though. Its sad that after all this time, people are still having such a hard time getting diagnosed.
  8. XKathiX

    XKathiX New Member

    I saw my primary care physician in August and she thought it was FM, so she referred me to the Rheumatologist who diagnosed my 3 months later in November.

    I would get another doctor - waiting until June of 2006 is ridiculous!

    -Kathi
  9. auntyemnga

    auntyemnga New Member

    I feel I first started having symptoms in Spring of 1984. Of course I didn't know what the symptoms were related to for over 10 years. I've had a lot of other health issues in between so it wasn't until about 1998 did I start researching CFS & FM. I've always been told to exercise and diet....that's easier said than done.
    A rhuemy diagnosed me with FM in March 2000 (just to give me a diagnosis). He did nothing towards treatment. Since that time I've been trying to do things on my own but with no success.
    I started the FFC in Oct 2005 and finally feel validated. I have not seen any improvement yet but I'm in for the long haul because I did not get this overnight, I do not expect results overnight.

    Hugs,
    Sheila
  10. onnaroll

    onnaroll New Member

    about 3years afer alot of test and specialist.

    I told my gp crying with bad flare! SOMETHING HAS TO BE DONE NOWWWW!!!
    I was sick of being in so much pain without proper meds.

    same day i was diagnosed with fibro so 3 very long years.

    I dont know how any of you got along that long. but i do believe some have it sever some mild med.
  11. Jeanette62

    Jeanette62 New Member

    I went to my FP doc in March 05 complaining of fatigue and chronic dizziness. I had been eating healthy, exercising and had lost about 20 pounds and told the doctor I don't understand I should be feeling better not worse. After many tests and months of symptoms he finally asked me does anything hurt...well now that you mention it this hurts and that hurts dadada....that was in Aug he sent me to a rheumatologist who I saw in Sep and was dx with FMS at the first visit after an hour consult and a tender point exam. I had tenderness in all 18 tenderpoints, most of which I wasn't even aware of. I tend to not be a complainer and not talk about aches and pains. I'm surprised my FP doc finally started putting it all together since I didn't complain about everything all at once. After all how much can you complain about in a ten minute office visit?
  12. Dorothee

    Dorothee New Member

    My symptomes started to manifest themselves about 14 years ago. They became very much worse and very, very clear about 5 years ago... and still most medics think there is not much wrong with me.... maybe just a little depressed (Yes! I get very depressed in docters offices!) and my age (being a woman).......

    So I got to struggle along and do it all by myself!
    Is it strange I'm sooooooooo tired?
    (haven't slept okay since 20 years)

  13. 30feeling80

    30feeling80 New Member

    God bless you.
  14. snooker11

    snooker11 New Member

    i knew what i had before any of my doctors did. most doctors don't want to
    label you with fm or cfs b/c there's not much they can do about it. it also unfortunately carries a stigma so they might feel it's easier if they just treat symptoms rather then label everything as FM or CFS.
  15. cred

    cred New Member

    I first had problems in 1998, thru 2001 I went to 8-10 family a rhuemy dr. all said no to lupus yes to lupus maybe, maybe not cfs. pre lupus. But no final diag. until Octobet this year.
    now I have a multitude of stuff I believe stemming from Fibro and auto immune diseases.
  16. schaken

    schaken New Member

    20 of the longest years of my life. It was in my head, vertbrae out of alignment in my neck, arthritis, and anything else you can think of.

    Was finally diagnosed about 2 years. While I didn't like the diagnosis, I was relieved to finally know what I have.

    Leslie
  17. DFL

    DFL New Member

    I complained for 5 years with neck,shoulder and then eventually all over pain, finally a rhemy diagnosed me, now Im working on disibility, been turned down twice. Hang in there.
  18. Kacjac

    Kacjac New Member

    Symtoms started about 1996, just got DX last month.11/18/05
    This is very hard on all of us,Knowing we have it, without any valadation,at least we can understand one another, when the outside world thinks we're nuts.I wish you all the best!
    Hugz, Karen
  19. kylesmom

    kylesmom New Member

    After four solid months of tests, my (absolutely fabulous) GP suggested we may be looking at CFS. Of course, the diagnostic criteria requires symptoms for at least six months, so I had to wait two more months for the official diagnosis. That was six years ago.
  20. elsa

    elsa New Member

    For a diagnosis. They get the brunt of referrals because it was a rheumatologist who came up with the diagnosing criteria for fibromyalgia. (Dr. Mohammad Yunus)

    My primary care physician diagnosed me ... I went in and said "I think I have this" ... pointing to a description of fibromyalgia and chronic fatigue.

    He said "you probably do .... let's see" and pulled blood to rule out the other usual suspects.

    Went back three weeks later and was confirmed CFS ... He did the trigger point test for fibro and then confirmed that one as well.

    Any doctor can diagnose and treat CFS/FM .... what is really needed is an interest in the illness and the know-how to treat it.

    Good luck with this. Maybe you can find another doctor .. or ask your original doctor where it's written that she cannot give the diagnosis?

    I'll be thinking positive thoughts on this for you.

    Elsa