All blood tests amd MRI scan are normal

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Oct 3, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi folks

    In the last few months I have had alomost every blood test possible (still to be tested for Lyme), and an MRI scan.

    Everything has come back normal. I have no doubt that I have CFS - and was disgnosed in Feb 04. But with the emergence of horrible new neurological symptoms this year, I have gone donw the testing path again.

    How is it possible to feel so sick, to be in so much pain, to literally feel like you are dying, to feel so impaired on a cognitive level - and then to be told essentially that the doctors cannnot find anything wrong with you?!

    This is truly a baffling illness. The sooner we get a true diagnostic test the better.

    Take care
    Michelle
    [This Message was Edited on 10/03/2006]
  2. Marta608

    Marta608 Member

    It's frustrating, isn't it? We can be just sure there will be some major problem discovered, only to have all our tests come back normal. My opinion about this is because CFS is primarily caused by a glitch in the Central Nervous System (neurotransmitters and the HPA-axis) which doesn't show up on routine tests. (I'm not sure what tests it does show up on at this point in time.)

    I never can figure out how I can occasionally feel one breath from death only to have the doctor smile and say "All normal!". That's truly the good and the bad news.

    Best to you,
    Marta
  3. victoria

    victoria New Member

    Hi Michelle

    All my blood tests have been normal too, etc., etc., altho I've been basically a 'higher functioning' CFIDS person.

    Then I watched my teenage son's health go downhill between 13-17... he'd lost 10# he could ill afford to lose, his BP was abnormally low, his pulse was also; he had the fatigue of CFIDS plus the insomnia/unrefreshed sleep like me; he had trouble remembering things etc. But then he got all the pain of FM.

    Our internist agreed something was wrong, but after all the blood tests that he could think of running, including one for hemochromatosis (something you should make sure has been ruled out btw, go to the hemochromatosis association to find out exactly what tests you need to rule it out as serum ferritin levels are not enough) he had no further options to offer us. He didn't even know what specialty to refer my son to.

    At that point I was following the Marshall Protocol and figuring out I had some sort of stealth pathogen as I was herxing to the abx, etc. So I took my son to a LLLMD who agreed 1) that he fit the clinical picture, and then 2) tested him for many of the stealth pathogens.

    He was totally positive according to CDC standards for Lyme, nothing else showed up altho it appears due to his slow response that he probably has other coinfections. Main thing is that he was herxing within 18 hours of taking his first abx dose.

    NONE of the tests for stealth pathogens or anything else is 100% reliable. My son was going downhill steadily, yet all his regular bloodwork like WBCs etc was completely 'normal'!!! I feel very certain that had I not taken him to get tested immediately, he just would've ended up wasting time and getting sicker and having the dx of Fibro!

    You might want to find a LLMD who will treat you based on a clinical picture. Please go to ilads.org and read their information about Lyme and all the different symptoms it can cause, and where you can find a 'LLMD' referral. Prohealth/immunesupport here also has a Lyme board that has a lot of good info (click on message boards up above.)

    It's a shame we have to educate ourselves and cannot totally rely on the medical profession, but it has become a huge political controversy in medicine unfortunately. As is CFIDS/FM, as we all know, all too well!

    I hope this helps,
    Victoria

  4. maedaze

    maedaze New Member

    I see you are in Auckland, I am just south of Hamilton.. we are almost neighbours!! HOWDY!

    I have been sick a long long time with M.E and fibro, I am now 39 and havn't been able to work for over 5 years now. I too can't believe that we can be this sick and yet still return 'healthy' results. I still cry when I get blood results back saying normal. Are you under Dr Vallings up there?

    I too have had all the tests, I suffer from daily headaches and migraines so had the MRI and spinal tap etc. All with no answers.

    Was on Epilim for the last 2 years that kept my headaches down to a dull roar, but it stopped working over a month ago and the migraines were back with a vengence. Neurologist has now put me on Verapimil which seems to be working so far... fingers crossed..

    Seems all we can do at the moment is releive what symptoms we can until someone out there figures out a cure.
    Which hopefully will be REALLY soon!!