so, so sorry for what you're going through. for so many, myself included, it took years & years and years before a proper diagnoses. and what's worse? when they run all nasty diseases past ya! don't let it drive you crazy. and just the same....being left with NO ANSWER or explanation to what's going on is just as worse, even more. especially when you know something's wrong, you aren't the way you once were, and it's not in your head. it's puzzling! not only to you...but to the physicians as well. no doctor likes a difficult, unclear case. it's easy to diagnose & treat a text book case of anything...but so many times that is just NOT the case.
i'll give a little explanation of autoimmune disease processes which might be easier to grasp.
true there is no definitive blood test to diagnose an autoimmune disease; but docs look at your CRP, ANA, SedRate, Rheumatoid factor, and various IgGs IgMs etc....also, muscle enzymes too. these help build a map to guide them on what to do next.
many times, if a person responds to an immunomodulator like Imuran, Plaquenil or some steroid...that also serves as a BIG CLUE that an autoimmune disease is present! if a person responds to Enbrel or Humira?...the docs actuallu use medication response as a way of diagnosing. cool eh?
safe to say, the majority of autoimmune diseases act similarly. they are complex, and not easily understood (whether they are viral mediated or bacterial triggered or what!) and they do or could effect the entire body.
for some reason not fully understood, the immune system which normally defends the body against pathogens, mistakenly starts to attack your bodies NORMAL cells & tissues! these include the lining of the joints & connective tissues (ligaments & tendons...even veins too) some autoimmune diseases also effect the tissues of the liver, heart & lungs and skin.
once triggered....tissue cells can grow abnormally, causing inflammation & swelling & pain.
i do hope this helped. or at least provided some clarity.
my best advise is to: keep regularly scheduled doc appts, find a good rheumatologist, a consult with an infectious disease doc, have a good primary doc too! and keep all bloodwork appts.
sometimes it might takes months for values to manifest in bloodwork, and they may be inconsistent too....but no Dr. will make a diagnoses based on just one thing....they look at labs, tests, physical findings, and what you tell them about how you feel effects your daily life.
this takes time, i'm sorry to say. but you've got a lot of support here! you hang in there!
take good care. erin
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others.