Discussions By Condition: I cannot get a diagnosis.

CVID???? Unknown immune disease/blood disorder...baffled!

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: lilLBcake
  • February 10, 2007
  • 04:22 PM

I am a 37 y.o. mother. I have been ill for four years now. I am currently on disability. I have had so many specialists look at me...and been so often accused of being nuts that I really don't know where to begin or who to trust within the medical community. I know I want my life back...and I want to enjoy my son...and I am willing to give this one more shot to see if I can find the answer that will work for me. This post might seem disjointed...but nothing about my case seems to make sense.

I am currently being treated for Fowler's syndrome/interstitial cystitis. I have an Interstim implant and I receive pudendal nerve blocks about every six months to control the god awful pain that accompanies this mercless condition. I take Levoxyl for hypothyroidism. I take Flonase and Albuterol to control my constant litany of sinus infection, ear infections, throat infections, bronchitis, colds, and other malingerings that NEVER seem to go away. I am on and off antibiotics a lot...at any given time...for a myriad of infections that when cultured seem to be a bacteria that would be harmless to someone else...but reek havoc with me.

One of trips to a (so called ) specialist was the allergist to see if any of this was caused by an allergy to something...when nothing too specific showed up other than some dust and mold...he ran an immunlogical profile. It came back a mess...he said he couldn't make any sense of it and said I needed to see a really good immunological specialist to further look into it. I live in Jacksonville Florida. He said UCSF was the best place to go...but how do I do that?

Here is what the labs show.

A delta platelet deficiency. Something about half the platelets have the brains that tell them to clot...and half of them do not. What I know from my own history is I never know when going for labs or a surgical procedure or if I fall or if I have a cut will it clot right away or leave awful cheloids...or will I bleed until I am dead. I have had two hemmorhagic episodes and one where I clotted and hommorhaged at the same time that left the ER docs shaking their heads. They blamed me and said I had done something to myself to cause it. How the ***l do I DO something like that?

The immunological labs showed
Immunoglobulin deficiency at the G and M

Immunoglobulin G subclass was deficient at level 1, 2, 3, and 4.

Pneumococcal antibody was shown to be at the low levels of protected across the board.

IGG was greater than 3...but greater than 11 is considered normal.

Lymphocyytes were in the normal ranges but low across the board except for killer cells and absolute NK cells which were non existent. Helper cells were only one point above out of deficient range.

Tetanus came out in normal range.

Oxidative burst came out with an inadequate stimulation pattern twice.

Regular Labs come out consistently schewed.

Hemoglobin and Hematocrit are low with Total RBC normal. RDW is high. Lymphocytes, Neutrophils, and Monocytes come out low...but usually within normal limits. But recently Lymphocytes come out consistently low...15% OR LOWER.

I have been told to stay away from the crowds and the school where my son attends to avoid colds.

I am consistently tired,...exhausted tired. Sleeping over 14 hours per day...and not much energy for anything else besides. Headachey, fevery...although not always...sometimes mmy temperature is so low as to borderline hypothermia (97 or lower).

I have been told it is nothing by my primary....and ignored by my endocrinologist.
To be honest I am scared to death of the medical profession in general and fed up with being told there is nothing REALLY wrong with me.

Does anyone know about this? Does this sound familiar to anybody? Does anyone have a really good diagnostician who is willing to go the extra mile to find the cause....adn then treatment to give me back my life?

Anything is helpful.

Thank you,

Kim

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