So frustrated with negative tests!! (long vent)

Discussion in 'Fibromyalgia Main Forum' started by marcus1243, Jan 21, 2003.

  1. marcus1243

    marcus1243 New Member

    I know that FM supposed to be a dx of exclusion, and that negative test results are a good thing, but I'm getting really frustrated at all the negative test results I'm getting back -- I was hoping there would be *something* to go on/give me a clue, but I'm running out of options. I just can't believe that anything could cause symptoms this severe (sore, tender weak muscles, burning, tingling, joint pain) and not show up anywhere. My pcp reckons that fibro and ME are 'benign' conditions, which is why they don't show any pathology. If this is benign, my heart goes out to anyone with RA, MS or Lupus, 'cos this ain't easy to deal with. Check this lot out:

    ANA Titre/Lupus
    Anti-CCP
    Blood glucose
    Calcium
    C-reactive protein
    CT scan
    ECG
    Echo cardiogram
    Electrolytes
    ESR (on 4 occasions)
    FBC
    Gastroscopy
    Iron
    Kidney function
    Liver function
    Lyme antibody titre
    Magnesium
    MCV
    MRI (brain)
    MRI angiogram
    Mycoplasma
    Neurologic exam (on 7 occasions)
    Paul Bunnel
    Phosphate
    RA factor (on 2 occasions)
    Serum B12
    Thyroid function
    Thyroxine (T4)
    TORCH screen
    TSH
    Uric acid
    Viral serology

    All negative,normal. The only things left are an EMG (my rheumy reckons it will be normal), spinal MRI (neuro says it will be normal) and candida/food intolerance tests.

    Anybody with similar story? Any more tests you can think of?
    Sorry for the long vent -- I'm just so frustrated that I can't find a way to attack this thing!
    --Marcus

  2. pam_d

    pam_d New Member

    I know this story so well! And I can add spinal tap, and every section of my spine (as well as brain) MRIs to the list, plus very specific somatosensory tests done at Stanford Univ. (I had many tests done because of the large number of neurological symptoms I had-----many of which I know you have from your previous posts). Only thing that ever came up was some cervical disc disease, which was shown by further testing NOT to be the cause of any tingling, burning, twitching, skin sensations, etc.

    By the way, I recently did have the candida/food intolerence tests. In my case, candida shown NOT to be a problem, but I have huge food intolerences (turned my world upside down, or at least my DIET!) that I did not suspect I had, mainly because I did not have GI tract problems to speak of. I am now trying to take probiotics, among other supplements testing showed I was deficient in, but having tummy trouble w/the probiotics---I'm unusually sensitive to drugs, etc, so this isn't uncommon, I will probably have to do 1/4 of a capsule to start, & build up slowly. How much of an impact, if any, this has on my FM symptoms, only time will tell. I have found in the last few months that drinking huge amounts of water in itself seems to help my pain & energy levels.....

    But the big enemy for me has always been the neuro. symptoms. It's as if I have a "short" in my electrical, or nervous, system that can't get corrected. I know you have these problems, too, & they are by far the most disturbing part of FM for me.

    It IS frustrating to keep getting negative test results; I've been at the receiving end of those so many times. You just want some kind of answer that offers an explanation; even if there wasn't a ready "fix" for it, you'd at least understand the WHY part of it!!

    Hang in there, Marcus....I know it's tough, though, from my own experience.

    Tingling right along with ya,
    Pam
  3. marcus1243

    marcus1243 New Member

    Feels like I should call you 'Sister Tingles'! ;)
    I've been thinking of having cervical MRI and spinal tap, but my neuro and rheumy think it's a waste of time.
    My rheumy is now thinking along the lines that I have some kind of inflammatory process that's affecting the small c-fibre nerves. I do think there's a problem with hyper-sensitivity there. If I have a hot bath, the tingling in my feet becomes worse (but ONLY if I have my feet in the water -- if I immerse myself but leave my feet out of the water, the tingling doesn't change.) Is it the same way with you? (That's the only way in which heat affects me, btw).
    The only tests I did come up abnormal on were a slightly low folate count and a slightly elevated CK count. My thyroid T4 was low-normal too. But they're not drastic enough dicrepancies to be concerned about, reckons my rheumy.
    And yes, that bloody tingling gets on my nerves! (oops, no pun intended).
    best wishes,
    --Marcus
    [This Message was Edited on 01/22/2003]
  4. Mikie

    Mikie Moderator

    I think this is probably the most difficult part of our evolution with our illnesses. If we stop and think about it, we should be thankful that our test are not turning up things like Lupus and MS. Those illnesses can be more lethal and the morbidity, believe it or not, worse.

    I know that just from a logical point, it's difficult for us, and sometimes our docs, to believe that having none of these things could make us so sick. We and our docs end up hoping that something will show up. At least that way, we could say, "Aha!" Our diagnoses are made through excluding other illnesses which can mimic ours and through observing our symptoms.

    Sweetie, because we don't at present have a lab test for FMS and CFS doesn't mean that these illnesses aren't real and shouldn't be taken seriously. Substance P in the spinal fluid may turn out to be a marker for FMS, but it isn't practical to do spinal taps to try to find it.

    Please do not dwell on the negative lab tests and be thankful that they have not show up other conditions. Spend your energy on learning all you can about what you have and the treatment options. There are lots of things which have helped people here.

    The good news is that researchers are starting to take our conditions seriously and eventually, there will be tests to help with diagnosis and treatments, even possibly a cure. Keep the faith.

    Love, Mikie
  5. pam_d

    pam_d New Member

    A hot bath definitely makes the tingling stronger; I love to take a hot bath because I'm always so cold, but the trade-off is, it usually exacerbates the neuro symptoms. I really notice it shaving my legs; the combination of the razor against my skin (because so many of my weird "feelings" seem to occur just below skin-surface), plus hot water---a really strange sensation.

    We should just keep communicating here (and there seems to be a definite subset of us with FM who seem to experience these strange neuro symptoms more than others do), I'm hoping one of us eventually stumbles across some kind of an answer that enlightens us all....at least a little. There are strategies for pain, some find them more helpful than others, but I have yet to find anything that really relieves this neuro stuff.....

    At least I know I'm not alone, I'm thankful to find folks who understand!

    Take care,
    Pam

  6. rge

    rge New Member

    Marcus,

    Please email me and I will try to help

    rge@uplogon.com

    Ron Eheman
  7. sb439

    sb439 New Member

    Hi Marcus,

    I've got CFIDS with some FM and came out positive on the following tests which you don't mention:

    noticeably low lymphocites (all!), i.e. immunesystem out of order (you'd need a full bloodcount or something for that)

    HHV6 reactivation (now dealt with, improved me noticeably)

    Mercury (I'm dealing with this at the moment)

    slight gluten allergy

    intestinal parasites (blastocystis)

    intestinal bacteria (citrobacter freundii and streptococcus aureus)

    All of these things can make you feel pretty ill!

    Susanne

  8. marcus1243

    marcus1243 New Member

    I did have a full immunological profile and very comprehensive blood testing/full blood counts etc. All normal!

    I guess the only way to go is food intolerance/candida/intestinal parasites etc. Doesn't seem to be any other way forward.

    But hey, thanks for the suggestions all -- I'm not giving up my search yet!

    --Marcus
  9. ckball

    ckball New Member

    I also want to thank you for answering my post about paresthesias. I was able to find more info. You told me to go to a neuro dr but that was the "best neuro in town" Even tho my arm went numb while he was there, he said my nerves were in good shape. What do we do, I like you have had numerous test that come back normal. I guess we do feel lucky it isn't worse like MS and such. Everyone says to think positive and make the best of what we have but it is so hard when you feel like crap so much of the time. Hang in there, your not alone. CB
  10. idiotsinc

    idiotsinc New Member

    Try a neuropsycologist. I'm having testing done tommorrow. Lot's of info pointing to the possiblilty that a good share of us have a neurological problem (see my idiotsinc post).