MS/Fibro/CFS-The whole thing is questionable

Discussion in 'Fibromyalgia Main Forum' started by TeresaBnGA, Dec 9, 2002.

  1. TeresaBnGA

    TeresaBnGA New Member

    Hi all!
    I have really been thinking about this and it has really been bothering me. Has anyone else thought that the docs just stick us with the diagnosis of Fibro or CFS when the test results for MS are negative?
    My symptoms are sooo much like those of MS. I just think in my mind that these are just something we get stuck with until we turn up a positive test result for MS.
    Think about how very, very similar it all is. Read the post from Jellybelly about her mom. I really believe all of us would benefit from treatment for MS even if we don't have positive results. I was on meds for MS and was doing quite well and then my doc left town and I had to get a new doc and he said I was over medicated and took me off some of my meds and now I am back to doing bad again. What is up with all this? He refuses to give me the meds back and told me if I lose weight I will be instantly cured-yeah right!
    If losing weight will instantly cure me then why did I get sick in the first place? I got sick before I gained the weight! Just my opinion.
    Soft hugs!
    Teresa :)
  2. TeresaBnGA

    TeresaBnGA New Member

    Hi all!
    I have really been thinking about this and it has really been bothering me. Has anyone else thought that the docs just stick us with the diagnosis of Fibro or CFS when the test results for MS are negative?
    My symptoms are sooo much like those of MS. I just think in my mind that these are just something we get stuck with until we turn up a positive test result for MS.
    Think about how very, very similar it all is. Read the post from Jellybelly about her mom. I really believe all of us would benefit from treatment for MS even if we don't have positive results. I was on meds for MS and was doing quite well and then my doc left town and I had to get a new doc and he said I was over medicated and took me off some of my meds and now I am back to doing bad again. What is up with all this? He refuses to give me the meds back and told me if I lose weight I will be instantly cured-yeah right!
    If losing weight will instantly cure me then why did I get sick in the first place? I got sick before I gained the weight! Just my opinion.
    Soft hugs!
    Teresa :)
  3. I worry that too many are getting stamped with the fibro disease diagnosis. Thats why we aren't being taken seriously, too many willing to pass everything off as fibro. I too have worried about MS but so far havent brought up the subject. I guess its just scarey. But is MS real painful?
    I think next dr. visit I will mention it again and see what he says. I have heard the weight thing too many times myself, it was a man dr. right?
    F~Butterfly
  4. JaciBart

    JaciBart Member

    but I always come back to this: we all have the same symptoms, so much commonality here, sometimes the strangest symptoms also, or we think and all of a sudden, we post them and bingo, a billion others with the same thing. Pretty predictable this fibro is.

    I am open to whatever it could be but I kind of have stopped looking, I was so sure at first it was something else, looked in every nook & cranny. Now I just deal with it and hope for relief. I don't anymore think I can get well and I don't plan for it, I have not yet had a remission, only a long flare since may 18.

    Jaci
  5. klutzo

    klutzo New Member

    I have seen many MS patients when I worked in a hospital, and I have a friend who got MS several yrs. after I got FMS. I am walking around, and she is now in a wheelchair. Some MS patients do have bad pain, but for most, not feeling enough is the problem. Numbness to the point that you trip over your own feet. Not just a bladder that makes you have to go a lot like us, but one that lets loose and makes you pee down your leg, and sometimes the numbness is so bad you don't even know you peed on yourself. I have not seen the personality changes in MS patients that I see in most FMS patients after awhile, but I am certainly no expert on MS. From what I have seen, I am very glad that my original diagnosis of MS was changed to FMS, as horrible as it may be.
    Maybe it will turn out to all be part of a continuum.....is that what you're suggesting?
    Klutzo
  6. Shirl

    Shirl New Member

    I certainly hope you are wrong, I agree with Klutzo here, I have only seen people with MS on tv, and I can assure you, I will take the Fibro any day.

    Plus I have had this now for 20 plus years, and it has not developed into anything other than what it started out to be.

    I did get more symptoms of other things as I got older, but I am still on my feet, and I have no numbness to speak of.

    Going to the bathroom frequently to tinkle is not pleasant, but not to have control till you get there is another story as Klutzo describled. I will take what I have, thank you.

    As for whoever said that your doctor said you had to lose weight and would be 'cured', tell him to 'stuff it'!!

    I have never been over weight in my life. In fact when the Fibro started, I weighed less than a hundred pounds, and right now am 115, could use another 15 pounds. Soooo that is a crock! Weight has nothing to do with Fibro as far as I am concerned.

    Shalom, Shirl
  7. pam_d

    pam_d New Member

    I was at least 30 lbs. overweight when I got FM. I have now slowly lost about 20, have another 10-12 to go (easy to lose now that my allergist put me on a no wheat diet so I have given up all my favorite things to eat!). I was sincerely hoping that I'd notice at least some difference in my fatigue level, low back pain, etc---didn't expect an FM cure, just maybe some little improvement. Haven't noticed anything helpful! I'm still glad I'm losing the weight, good for the heart, yada yada yada----but no noticeable improvement, though I didn't have morbid obesity or anything. I really think some of these docs have no knowledge about FM, so have nothing productive to contribute to the treatment plan---so "lose weight" is a convenient thing to say!

    Hugs,
    Pam
  8. marcus1243

    marcus1243 New Member

    ..many, many people with MS have fibromyalgia as a concomitant condition, so that it's hard to separate one illness from the other. Because the CNS is subjected to repeated insult in MS, it's no wonder that it sensitizes and amplifies pain signals. An MS patient who complains of muscle pains might well be experiencing symptoms of FM rather than spasticity pains.
    I also have symptoms of MS (tingling, frequent urination, dizziness, weak leg muscles, blurry vision etc). But I also know that I would fly through any neuro exam with no deficits showing. I also -- and I suspect this applies to MANY people on this board -- have not to date (touch wood here!) suffered anything that might be interpreted as a demyelinating 'attack', (which is a clear marker of MS). Rather, my symptoms exist on a continuum, ever-changing, ever-evolving, with almost *too many* things wrong with me to be MS. As I strongly suspect, this is the case with many people who have FMS/CFS with neurological involvement, and who fear autoimmune disorders.
    The sad thing is, no neuro will take us seriously until that first attack, which can leave a person partially blinded or disabled. Then they will agree on MS. I sometimes think the fear of that attack is actually worse than the FM itself.
    --Marcus