Dr D,,, yes, I am medicating for Mast Cell Disease even though I do not have firm diagnosis as yet. I started on antihistamines when I read the paper done at Vanderbilt which reported on the coexistence of a Mast Cell Disease with POTS. Since the antihistamines helped, that encouraged me to look deeper…. thank goodness!
How are you doing with the Gastocrom? It made me nauseous in the beginning, so had to take an H2 blocker before I took the Gastrocrom.
Dr. Clair Francomano.. I have heard that name before. I may have to see what I can do about an appointment with her. The Rheumy I saw a few weeks ago said I did not have the Vascular type, but I don’t know how much…If anything…he knowsd about EDS.
Sending my best to you and your children. The stuff can be so difficult to deal with.
Hi Gail, Wow, there is a paper from Vanderbilt?! Can you help us with a link? Somehow I missed that one! Gastrocrom — I’m doing fine with it. Sometimes I get nauseous, but I think it’s from taking a sh_t load of medications on an empty stomach! Dr. Francomano can usually tell you whether you need to worry about the vascular form when she does a clinical diagnosis. At least there is a genetic test for it if you’re not sure.
Sometimes rheumies only seem to understand the types of EDS they can check for with a blood test, but most of us still need to rely on clinical diagnosis. That’s where someone like Dr. Francomano can beat them all. If in doubt, I ask the doctor if they are comfortable with clinical diagnosis of classical and hypermobile EDS. How is the antihistamine regimen working for you so far? Thanks for your help, and please keep us posted! 🙂 Diana