Discussions By Condition: I cannot get a diagnosis.

Autoimmune undiag.??? Does this sound familiar to anyone?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: lilLBcake
  • February 11, 2007
  • 03:01 AM

I am a 37 yo white fem, mother of seven year old son. I have been sick for four years now.

Here are what a recent batterty of lab test showed for me. They were done by an allergist who said he couldn't interpret them....and I should see someone more specialized in autoimmune....like UCSF medical center....but I live in Jacksonville Florida...and he offered no help in coordinating getting me out there. I am so lost. And I am so scared of the medical establishment now as to border on phobic. What i hope is that someone recognizes these lab results...and the odd cluster of symptoms...and maybe even some of this tragic mismanaged medical history and can send me to a doctor who may have helped them. PLEASE!

Autoimmune assay showed:

Tetanus anibody was good...but pneumococcal was low...low of normal.

Oxidative Burst was done three times and each time showed an inadequate stimulation pattern.

Westergren sed rate was high.

C-reactive protiens:
IGA was mid range
IGG was low REALLY low
IGM was one point above normal range for low
IGE was low at 27...one point below normal range

IGG breakdown
subclass 1 was zero
subclass 2 was really low
subclass 3 was 1 point above normal low
subclass 4 same

IGG antibody was less than 3 (I assume that means negative)

Lymphocyte subset panel
CD3 normal low
Absolute CD3 (Tcells) Low...range was 840 - 3060...mine was 851
CD4 low side of normal
Natural killer cells were at 4 (range was 4-25)
Absolute NK cells REALLY LOW - 28 (range was 70-260)
CD19 low range of normal
Absolute lymphocytes...low range of normal

End of report

Last CBC was typical for me:

RBC normal...hemoglobin low....hematocrit low....RDW high.

Despite the fact that I had a bladder infection....my lymphocytes were low..Mono, Eosin, and Baso.

I was having my nerve block done...the doc gave me a kicking shot of ancef...said it was normal for me...and sent me home.

I have had two hommorhagic episodes....one was just bleeding (early 2004)...the other was bleeding and clotting at the same time(Thankgiving 2004). The second one the doctors at the hospital accused me of harming myself somehow.....and had me locked in my room for two weeks for observation. How does someone do something like that to themself?

Blood tests later revealed a Delta Platelet Deficiency. I don't quite understand this but the hematologist who saw me in the hospital but wouldn't see me after I was released said..."Half of the platelets contain the brains they need to clot...and half do not...and when they get confused and I have multiple site injury or trauma...my body can spontaneously clot....as it did in my left arm....and hemmorhage into my right without clotting."

I am currently being treated for Interstitial cystitis and Fowler's syndrome(retention and pain). I take levoxyl for hypothyroidism. I have an interstim implant(retention) and I receive pudendal nerve block injections for the pain.

I had multiple miscarriages...before and after the birth of my son...unexplained. My blood can clot in a needle while in the middle of a lab draw causing me to have to suffer multiple needle sticks for a simple draw. Any wound...even acne takes forever to heal. And any kind of skin wound can either heal up fine...or cause a horrible cheloid. My body now looks like a topo map. I have at times had adrenal failure that spontaneously corrects. OR hearing loss that corrects. Or massive monthly bleeding that inexplicably after two or three months goes away.
I always seem to have a litany of colds....coughs....infections from bacteria that would be harmless or in colonizations that are off the chart compared to normal. I have been asked so many times if I am doing this to myself I am starting to question if I do...but I don't. It seems when I start on antibiotics...I can't get off them. The infection takes forever and a day to go away....and always two or three antibioitics. The antibiotics erode the GAG layer of the bladder...compounding the IC issues causing extreme amounts of pain. THen I become nonfunctional....not just moody...but so tired I can't get out of bed. Sleeping 14 or more hours a day and still exhausted. I have lost my marriage....and am about to lose boyfriend...he has had it with the confusion...and he feels helpless and driven away...but when it hurts..and I can't get answers from every place I have been..or flat out turned away by physicians who don't want to look for the answer. I am at my wits end. Please someone...if you know or think you know what this sounds like. Please save my life!


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