RE: Re: What hospital?

[Guest guest]

That sounds exactly like what he has. The doctor has referred to it as

agammaglobulinemia to us, but he has said several times that he is deficient in

IGG, IGA, IGE.... and he does have IGM..

He was on several trial medications as a young child including a trail drug

GCSG(something like that) that was given IM. I had asked about the possibility

of a bone marrow transfusion but was answered that it wouldn't do any good since

we aren't sure what the actual cause of his immune problem was.

We treat him symptomatically. Needless to say.... he has a lot of symptoms to

treat.

He's been talked about across the US amongst Dr.'s but we've only seen our ONE

immunologist.

The whole PSC is devastating to me to think this will top off his other

complications. He never complains. He never loses hope and never loses faith.

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[Guest guest]

Stacey,

I have had cvid all my life (totally deficient in IgG, IgA, IgM, IgE) and

have been receiving ivig every three weeks since 1990. I was diagnosed with

" something like PSC " 11 years ago. In 2003 I had non-hogkins lymphoma, which

caused lymphocytic deposits in both the kidneys and liver leaving me with

30% liver function, and 50% kidney function. I am now on the transplant list

(for a liver only). We have always considered it just another pot hole in

the road of life. My kids have grown from being toddlers, to now starting

high school, and hopefully I'll see them both get married and have careers.

I look back at some professional photos I had taken when the psc diagnosis

came up, thinking they would need a good photo of their mother as they

wouldn't remember me....thank god they don't have to remember me by those

photos. They were shockers!

Hang in there, we thrive on being complicated. I laugh when I see medical

personnel meet me, and amaze that I am so young for such a big complicated

chart (I'm 43). It gives me my kicks for the day!

Penny T (Australia)

That sounds exactly like what he has. The doctor has referred to it as

agammaglobulinemia to us, but he has said several times that he is deficient

in IGG, IGA, IGE.... and he does have IGM..

The whole PSC is devastating to me to think this will top off his other

complications. He never complains. He never loses hope and never loses

faith.