How Many Doubt Their Dx..??

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Nov 10, 2006.

  1. greatgran

    greatgran Member

    I have posted on this topic a few years ago but since we there are so many new ones thought I would post again..

    Some days my symptoms fit other days not..and the changing of symptoms and how I feel from day to day..Makes me wonder what in the heck is really wrong with me...

    Just wonder how many question your Dx..After five years I still find myself wondering if CFS/ fibro is what is really wrong with me..I have been to many doctors and they all seem to question this DD also..Maybe its because they don't know how to treat or much about it...Hoping one day we will all know the secret to this life altering disease...

    God Bless,
    greatgran
  2. Bruinz

    Bruinz New Member


    I think most of us question if there isn't something
    bigger and worse wrong with us.

    I have an older lady friend (just friends) that I meet
    at a support group many many years ago. We have talked
    about the same thing many times.

    She has now been diagnosed with Parkinson. Was her
    FM/CFS the early stages of Parkinson. Or is she so
    unlucky to get all these illnesses and others.

    I am 40 years old and have had FM/CFS for 9 years.
    I do wonder what is in store in later life.

    Thanks

    Bruinz
  3. fivesue

    fivesue New Member

    Now that I'm almost completely free from AD's, and since the doctor the dxed me was a flake anyway, I don't really know what I have if anything....maybe just old age. I don't know.

    But, I know my 50's were bad health-wise, and now at age 59, things seem to be leveling out a bit. I don't know. But I do know that I feel better off the AD's than I did on them....sleep better, etc.

    I guess I really don't think I ever really had FM...I think it was the result of a too quick cutting of Effexor and a low thyroid.

    The pain...I don't know, but I understand where you are at in this pondering. I usually don't use the term FM because of the negative repsonse I get from doctors, etc. It's not right of them, but that's how it is where I live.

    Get by the best we can, huh?

    Sue
  4. jmcdelaney

    jmcdelaney New Member

    I think mine is undetected lyme. Have since the beginning. I used to live in Lyme Connecticut...guess why they call it lyme disease. Have had plenty of ticks. Been tested 3 times...negative, negative, negative. Have told the Dr that there is a lot of proof that the test is not reliable; he keeps saying it is more likely to produce a false positive...not from what I've read. I really need to get off my duff and insist on the Western Blot test. It's supposed to be more reliable.

    Joann
  5. beachwalkerbill

    beachwalkerbill New Member

    Which day of the week are you talking about?
  6. Seeseaisme

    Seeseaisme New Member

    I've been dx'd with FM, but I have a lot of things going on right now, that seem to match up with Lupus and CFS. I have to talk to my doc about this. I made an appt for next week.

    If he can't give me answers to my satisfaction, I'm going to ask him to refer me to a rheumatologist or some specialist that can help me.

    seeking answers myself, sees


  7. Mini4Me

    Mini4Me New Member

    they come up with a test of some sort to prove to me beyond a shadow of doubt that this is what is really wrong with me.

    Some days I feel like I must have bone cancer or bone marrow cancer, or muscle cancer, or I'm slowly dying of chemical exposure of some kind, or my brain is sick and is sending messages to my body to kill me with pain.
    Mini
  8. FOYBOYFOY

    FOYBOYFOY New Member

    ive seen 10 doctors and have about 4 dx:
    stress-infectious disease doct
    cfs & fm-rheumy
    stress/virus-neuro
    autoammuine disease-2nd rheumy
    there are about 75 to 100 different autoammuine diseases so i guess i get to take my pick.
    im not sure if any of these doctors are correct so i keep pushing to find an answer that i can live with- i just need someone to convince me and i can live with it and move on !! not sure ill ever get the answer- so i thank GOD for each and ever sunrise and sunset, live in the present and dont look to far ahead--GOD BLESS FOY
  9. Clay2

    Clay2 New Member

    I guess there is one consolation to getting CFS so abruptly. My doctors (and I) thought I was dying and looked closely at everything. On Tuesday I am going in for my 5th CT scan this year. I've had lung, liver and GI biopsies. If there was anything major wrong, they'd surely have found it. By the time they did all the tests I was over the worst symptoms and 'just' have CFS left. There is very little doubt in my mind that I have post-viral immune problems.
  10. twitcher

    twitcher New Member

    I clearly have fibro. I have 14 out of 18 tender points. I was diagnosed by Dr. Pellegrino. However, I do not believe it's "primary" fibro. I have a history of bullseye rashes with numerous negative lyme tests. I have taken antibiotics for several months with improvement. I had to see a doctor out of state to be treated. I have lots of neuro symptoms....numbness, tingling, twitching etc...too many to list. All neuro tests for MS normal...spinal tap, numerous MRI's, EMG's, evoked potentials etc....I've seen 4 neuro's, MS specialist, rheumatologist. All said no MS. All my lab work is normal. I don't know for sure but I do suspect seronegative lyme. Also, the western blot is better but none of the testing is reliable. My tests were all WB's.
    [This Message was Edited on 11/11/2006]
  11. MsE

    MsE New Member

    Greetings, my friend! You know I have my doubts. I find myself thinking "It really IS all in my head." I find myself thinking, "The doc missed a heart thing." I find myself thinking, "I'm just lazy." The whole shebang! We've talked about this in the past, Greatgran, and I would hope that by now I would have gotten over the doubts, but I haven't. Warm Hugs, MsE
  12. emttoni

    emttoni New Member

    Its the drs! I spent so much time on the puter trying to figure out what was wrong with me as the drs had no clue. Then the hardest part was trying to convince the drs that these dd's were what I had.

    Now anytime I think I have something I research, research, research first then go armed to the teeth to the drs. (I used to tease pcp that I was his worst nightmare - I was female, I was somewhat intelligent and I had a computer and a Taber's medical dictionary!).

    Main pcp had no problem with me coming in armed with paperwork but his replacement is a bit more bothered by it. But my opinion is I dont care. If they were doing their job, I wouldnt have to do it for them!

    She is more the type to test this and test that but wont do the tests I ask for. So when her tests come back negativefor whatever then I request to go to a specialist who will do the test that need to get done (the ones I wanted done to begin with).

    Gentle hugs ~ Toni
  13. pw7575

    pw7575 New Member

    My experience sounds like what clay2 posted. My CFS started out as a virus then into CFS. When I first got ill the doctors and I thought I was dying of something. Had EVERY test known to man done on me. CT scans, MRI's, endoscopy, sonograms, crazy neurological tests, etc the list goes on and on. I was put through the mill until I was finally told post viral fatigue syndrome/chronic fatigue syndrome.

    So most of the time I am confident that is what I have and that there is some lingering virus or something that has made me ill.

    BUT then there are the days that I am feeling extra lousy where I think maybe they missed something and what if they were wrong and there is something there that they missed that needs to be treated. Especially after 5 years. Sometimes I think maybe there is something they could find now that they couldn't 5 years ago.

    SOO I am back and forth. Most of the time I agree with my diagnosis but sometimes I think maybe it is something else. So I don't rule out anything and keep looking into stuff.

    Take Care,
    Pam