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02-05-2016, 09:08 PM | #7 | ||
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Thank you so much for your interest....your posts are always so intelligent, informed and interesting......based on your history, I was wondering if you had been tested for MCAS. Testing:...tryptase levels (sometimes normal with disorder); histamine, prostaglandins, and leukotrienes in an iced, 24-hour urine sample; sometimes a bone marrow sample. Antihistamines: I'm hesitant to try antihistamines because they tend to act antithetically and make me hyper ....yes Benadryl keeps me awake (although they do help my allergy symptoms). I would just like to know if I have MCAS before taking anything. I have so much trouble sleeping anyway (I'm sure you can relate). Bed: I am extremely uncomfortable standing and even sitting with my head unsupported. I do have a body worker/yoga teacher coming 3x/wk. She's great. I also push myself outside as much as possible. I never feel "normal." (I was very high-energy and athletic before all this). I thought it was simple fatigue....neuros concurred. So I had my first tilt table test two weeks ago. My BP dropped from 149/90 to 80/60 before I was vertical. I began passing out and they stopped the test. I had no idea my BP is so labile.....this is why it is so hard to stand/walk. I also have POTS. I can't believe my neurologists were not on to this. (I found my own cardiologist...he thinks the cardio stuff is "severe," and found other heart issues as well.) I had a nuclear stress test last week and I'm waiting for results...I'll be going in Tuesday. I would be very open to your suggestions and would love to confer....how do we PM on this site? By the way, I had three panels of testing for autoimmune disease and nothing! Again, thanks so much! Sylvie |
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