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Old Tue Nov 20, 2007, 08:57 AM
Splitz Splitz is offline
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Join Date: Nov 2007
Location: Central coast of CA, USA
Posts: 4
thanks Marc!

For both the welcome and the information!

I visited the site you suggested earlier yesterday, I am still waiting for an activation link. I tried registering a second time, but it says I have already submitted my email addy, LOL!

I certainly do plan to seek out a doc with far more experience with PNH. Mine readily admits he has seen only 2 patients in his career (and by "seen", I am not sure he TREATED them, heh:-) my primary care guy says the same.

I have an appointment with a young guy out of Stanford for a 2nd opinion/better explanation, but I am leaning toward UCLA after I see him.

When were you diagnosed? I have only had to blood transfusions and many, many iron infusions since February. I would still be having them (and would still have no diagnosis aside from anemia) if I had not pitched a fit and demanded to have my marrow tested. Doc did not feel it was necessary. I disagreed. He got huffy. I stood my ground. Glad I am such an obnoxious beast.

Do you have nausea? I have really been struggling with this, I think it is the iron, but I have no real idea. I am taking Procrit, folic acid and oral iron. Any clues?

Again, thanks!@

Lee
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