Mystery FINALLY solved?!

[lhasa88]

Thanks to you whip-smart people, I think I may (just today) have solved the riddle of "oh dear, what can the matter be"! It's been so many years... I'm 55... that this feels like a miracle. After googling something or other and landing on these boards, I couldn't believe my eyes when I read that a few of you actually have hypo/hyper immunity going on in the same body, at the same time.

This is premature, but I'm 99.9% sure that I have PIDD with secondary SjS. I've been waist-deep in autoimmune diseases for the last 15 years, thinking I was on the right track, with diagnoses of UCTD and SjS. I'd be willing to bet my last dime, though, that the real culprit since childhood has been CVID.

Speaking of my last dime, I know the search for the right immunologist begins NOW. I live in Northwest Arkansas, but can travel - well, barely. I've felt so bum this summer that I'm a little afraid that it's already too late. Trying to stay positive and focus on gratitude. This is an amazing moment in my life. I'm glad I have you to share it.

Recommendations for specialists? Thank you.

Laura

[Carolina]

Welcome Laura,

I started with a gob of apparently autoimmune/allergy conditions and was finally diagnosed with PIDD (CVID).

I started IVIG last year in August.

Welcome to our forum.  Here are people with the most amazing range of experiences and very very supportive and loving.

Hugs,,  Elaine

[anita]

Welcome,

I also have PIDD/CVID and receive IVIG.  I was getting it for 9 years, then stopped due to severe reaction, but back to monthly infusions again since last June and infections have decreased significantly.  I also think it helps overall for the Sjogren's...as it modifies my immune system.

[Pisces24]

I got diagnosed (finally after 3 yrs) of Sjogrens at a teaching research hospital in Iowa, UIHC. I really like them there as they go after a problem and don't tell you it is all in your head, etc. etc.

When I go for my yearly checkups, I always get the main dr and anywhere from 1 to 3 "learning drs". The main dr asks the other ones questions and makes them THINK. They don't doctor out of a textbook - which I am sure you have run into during your 15 yrs.    I feel they are really listening me, not putting me off, and are doing something.

I'd recommend one of those if you have one in your state or nearby where you live.