I would think at least a few others here are likely to have Mast Cell Activation Disorder .. perhaps not Mastocytosis, but the MCAD or MCAS is very very possible.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005675/
http://www.ncbi.nlm.nih.gov/pubmed/16881127
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More info on MCAS
http://www.corebrainjournal.com/2016/07/028-lawrence-afrin-mast-cell-activation-syndrome/
http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/
Thanks Jazz, I've been wondering about this very topic of the connection between MCAD and SJS.
I feel my SJS symptoms are triggered by the MCAD since triggers severely worsen my sicca symptoms.
I found a clinic that specializes in mast cell issues and am awaiting my appointment!
That's wonderful, Sharon! Keep me posted.
I hope others here will realize that if they ALSO have MCAD, there is treatment that could make it better ALONG WITH SOME OF THEIR SJS SYMPTOMS.
How would one go about getting tested for a mast cell disorder I think if I asked my PCP or rheumy they would just look at me like I was crazy if they even knew what I was talking about? I do believe the huge increase in histamine issues this year hasn't helped my autoimmune stuff at all!
Thanks Jazz for the links! I will read them carefully. My allergist/ immunologist said I don't have it due to the fact that I get hives as well as welts with all my stemic itching! Instead I got the autoimmune uticaria diagnosis. Sigh!
Hi Tharrell,
Was your diagnosis based on any specific testing such as blood work?
Quote from: Tharrell on August 02, 2016, 08:24:50 AM
Thanks Jazz for the links! I will read them carefully. My allergist/ immunologist said I don't have it due to the fact that I get hives as well as welts with all my stemic itching! Instead I got the autoimmune uticaria diagnosis. Sigh!
_That was my first diagnosis .. by my clueless allergist.
Quote from: Sharon on August 02, 2016, 06:05:10 PM
Hi Tharrell,
Was your diagnosis based on any specific testing such as blood work?
Based on a 24 hour urine collection for histamine. I think the tests are listed in one of the links I posted above. It's in one of the last two links. (Dr Afrin)
The best thing to do is find a doctor who knows how to handle this. Most GP's don't know what to do and will not use the right labs. Mayo is the only place that properly handles the lab work. Mine was done in Missouri, but shipped refrigerated to Mayo.
They also test Tryptase, but that can come back negative in MCAD patients .. it's mostly for mastocytosis. My tryptase was normal. I was also normal on the prostaglandins test.
There's a mastocytosis group on Facebook that has a list of doctors for each state.