Well, after many months of recovery, I started to go down hill this last few weeks. 2 ER trips and countless doctor visits, we still are not sure what is going on in my darn brain.
The good and exciting news!
I am a little hot potato! ( that's not the good news). Let me explain, every Dr I have seen these last 6 months gives me yet another prescription of drugs and then passes me off to the next dr. This game off hot potato is very frustrating, especially when my symptoms are getting worse and the drugs they prescribe are some pretty intense drugs. Now the good and exciting news. Johns Hopkins has agreed to see me! Johns Hopkins pituitary research center in Baltimore is the only place I have found that knows ALH ( autoimmune lyphocytic hypophysitis) right now they have uncovered and studied 233 proven cases. Yesterday, my mom and sister-in-law Brenda sent them a desperate plea (via email) to help me. A doctor from JH, Patrizio Caturegli MD, wrote back to us this morning stating he is going to take up my case, giving me a list of data he wants and instructions to come to Baltimore for a full work up. Yes!!! Finally someone who is not only interested in my ALH but studies It. :-). I think I've even printed up one of his papers to give to the doctors here in Houston to understand my Dx better :-).
Hope this made sense, just giddy with hope that all the work me and my wonderful family has done to get me better is finally paying off.
I can't wait to get better, get back to our beautiful floating life aboard Rain Dog,
and also go on land adventures aboard Buttercup our RV.
Hope all is well with everyone, sorry the "thank you" notes are late, please know that I think of you often and smile over the perfect day you all made our wedding.
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