SammyJo Posted September 10, 2017 Report Share Posted September 10, 2017 While at MAYO I asked the dr to check my Tryptase levels and to write a prescription for a 24 hr urine test to do at home. He emailed me the results, the number was "high" and said to do the Tryptase blood test again with my primary back home because it could be a false positive. I just received the second blood test result and it is also "high". I am awaiting urine results currently. I found an MCAS doctor in my town but was told he only sees patients that have been diagnosed with MCAS.... So my question is, what kind of doctor do I need to go to in order to be "diagnosed" or just further explore this and see what is going on? I requested these tests on a whim, since I am trying to find the cause of my POTS and other problems. I have read a little information associating POTS with MCAS. I don't know a lot about it so it looks like I will have to be my own doctor once again. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted September 10, 2017 Report Share Posted September 10, 2017 My daughter sees a hematologist for hers. The Tryptase level the first time she had it run was 17. This last time when it was checked, it was 11, but that was on h1 and h2 blockers. Should have been a lot lower. Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 11, 2017 Report Share Posted September 11, 2017 Mine has varied between 9 and 17...still exploring this as well. Quote Link to comment Share on other sites More sharing options...
TCP Posted September 11, 2017 Report Share Posted September 11, 2017 I was referred to an immunologist. Quote Link to comment Share on other sites More sharing options...
Jemima Posted October 16, 2017 Report Share Posted October 16, 2017 I dont know if i have MCAS what are the typical symptoms? I do know i am hyper senstive to drugs i seem to have very over reactive reacrions to even tiny bits. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted October 16, 2017 Report Share Posted October 16, 2017 My daughter's symptoms were more allergy like. She would sit on the couch in the evening and scratch. I used to tell her to stop or she was going to scratch all her skin off. I gave her fairly high doses of Benedryl along with h2 blocker and it helped. A couple of doctors had remarked at the high dose of Benedryl, so we lowered it to about 25 mgs 4 times a day. Still helps, but she's had a couple of strange rashes as of late and I'm not if it's autoimmune related or MCAS. Still looking into that one. She has migraines and GI issues as well. She's not too sensitive to meds as a general rule. Quote Link to comment Share on other sites More sharing options...
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