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Old 04-06-2020, 08:07 AM #1
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janieg janieg is offline
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Join Date: Jan 2014
Location: Maryland
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10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
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Sorry for the delay in responding.

I was in the middle of a horrendous flare one Friday night when my sinuses slammed shut on me. I had no congestion, just couldn't breathe through my nose at all. Zero air flow. I knew that had to be a big hint.

I spent the weekend consulting Dr. Google, and long story short, by the time Monday rolled around, I had educated myself on Histamine Intolerance (HIT) and MCAS. I called on Monday to make an appointment with a highly rated allergist/immunologist just two miles from men. In an AMAZING stroke of luck, he just so happens to be one of three doctors in Maryland listed as being MCAS-aware in a large MCAS support forum on Facebook. He strongly believed I was correct in my self-diagnosis and did some bloodwork. My histamine levels were indeed high.

The fact that I have almost purely neuro symptoms is atypical. Most MCAS patients have more typical allergy symptoms or gastric symptoms, but to the extreme. I'm in uncharted territory for him, but he put meon a typical HIT regimen.

I take 40 mg Famotidine (Pepcid AC) every morning and night, and one Zyrtec at night. I also have DAO supplements I take, and have switched to a low histamine diet. All of this has definitely made a big difference in how I feel, but I still have lingering "baseline" neuro symptoms. I'm going to be consulting with a MCAS-knowledgeable Integrative Medicine doctor in Illinois who has helped another MCAS person I met on FB who is the only other person I've encountered with neuro symptoms similar to mine. The goal is to find the root cause of my MCAS.
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