Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Living with a Flare . . . http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1364424969 Message started by dixiepicsy on 03/27/13 at 11:56:09

Title: Living with a Flare . . .
Post by dixiepicsy on 03/27/13 at 11:56:09

Hi! I'm new around here. : ) I have Mast Cell Activation Disorder and am a patient of Dr. Afrin's. Absolutely the best doctor I have ever met! I've had many health issues all my life, but several years ago I had idiopathic acute pancreatitis directly following a very bad allergic reaction to natural fingernail polish. From there it went downhill. I was diagnosed with MCAS this past Sept. In Nov., I had what was termed a "wicked mast cell flare" that caused what is believed to be blood clots lodged in the peripheral veins in my left foot. I had ischemic foot that has since healed, but I'm left with a cyanotic foot with mottling up my leg (especially when down), my right foot is following the pattern (without the "whammo" and ischemia the left one started with), and now my hands are beginning the same pattern as well. I have been tested for pretty much every coagulation disorder known to mankind plus some, and everything comes back "normal". I have some abnormal lab results, but nothing points to a specific disease process. I've also seen a vascular surgeon, and he has no clue. I'm becoming a familiar face in my circle of doctors. : )

I live in pretty much a constant flare, but my Lord gives grace and strength to face each moment. : ) I'm in the trial and error stages of finding the med that will stabilize my mast cells. So far, it's pretty much error. : ) Thankfully, I do have H1 and H2 blockers that give me some relief.

Well, that's about all, folks! : ) A medical mystery much like the rest of you out there. : ) I look forward to getting to know all of you and sharing our journeys. : )

Title: Re: Living with a Flare . . .
Post by Joan on 03/27/13 at 18:05:42

So sorry you've been having such big problems! You have a good doctor, though, so hopefully he'll help you get more stable. Have you tried gastrocrom or ketotifen? Are you looking for triggers, both environmental and foods?