After having the worst set back since starting this roller coaster with systemic Masto, my doctor has informed me that while he was at a seminar last month, he met with a doctor from the NIH who is the head of their masto research AND he has agreed to see me.  Not sure what this will mean but I am so excited. I am not sure how long it will take to get in to see him (I'm in Indiana and Maryland is a bit of a hike) but I am excited.  My poor husband (who I just married 3/26/12) had to witness what he called the worst thing in his life.  After returning from our wedding/honeymoon (New Orleans) on a Sunday night, I began swelling, itching, couldn't breath-same old thing but only worse.  My hives had become one large hive covering my entire body and then the blood blisters started all over my body. They are usually confined to my hands and wrists but my eyes were bleeding as were my ears.  My doctor immediately saw me Monday afternoon and after numerous visits and shots and of course the dreaded steroids, I am finally able to get out of bed today.  Hopefully when I get to the NIH, and hopefully become a test subject, I can provide all with additional information and hope.  Many blessings to all and hopefully one day, there will not be a need for this site!

What a great place I was  a patient there when I first got sick and they were convinced I had a pheo I have never had such great care and understanding they were absolutly amazing will u actually be admitted too the hospital or will you just be seeing the Dr. I know they usually only see patients if they are doing a study so you got very lucky. My only complaint was after they did not find a pheo they kicked me out without exploring what else my problem could be they had so much documentation as I was actually admitted to the hospital for 3 days. I know and understand i was just there too rule in or rule out a pheo but its so frustrating that the symptoms of these disease so overlap that I wish they had just mentioned it too me so I could explore that option I did leave there terribly depressed as I felt I had no hope after finding out I did not have a pheo and now I am so thankful I did not have a pheo as its such a diff disease and i understand it usually comes back. I hope this Dr that u see will educate the endocronologist there that see PHEO patients in mast cell problems good luck let us know how it goes I am so sorry your honeymoon ended in your illness how sad and what a way too start your marraige but it will make you as a couple stronger ok take care and good luck

Valerie,

What a terrible ordeal!  I'm so sorry you are having to go through such a difficult time.  I'm sending you every good wish that NIH holds the answer for you!!

Wising you good health,

Julie

SO sorry to hear this. Eerie that my downward spiral was right after my honeymoon too, but also after IV contrast.