I will be seeing Dr. Afrin tomorrow for my first time to evaluate me for MCAD. I have been waiting for this appointment for 9 months after reading his book last year. It's hard to imagine how much I want the tests to show positive (which seems really weird). But after decades of ME/CFS I would like to have a diagnosis for which there are treatments!
I'll post again after the appointment. If anyone has advice for me please feel free to share or PM me. I don't know why I didn't think to ask for advice before.
Lynn
Hi Lynn,
How did your trip to Dr Afrin go?
You're about 9 months ahead of me in my journey i'd say. Your post resonated with me, as i'm sure i'll be going through the exact same emotions when I see him in the not to distant future. I've just started getting back into MCAS research after failing a diagnosis 2 years ago. I had my tryptase & histamine levels checked, along with maybe one other test, the tests came back as normal...
I knew at the time getting a diagnosis for it could be quite hard, but I had no idea how complicated the route to diagnosis was going to be for some of us! I've just recently read a few parts of his book and came across his section about idiopathic nosebleeds.
I had my nose quarterized three times from the age of 11-15, I feel that's quite unusual. I also used to have quite a lot earaches, problems going even 1m deep under water without ear pain. The latter seemed to reduce quite a bit as I got into teenage hood.
Although one of my annoying symptoms now is constant fullness in ears 24/7, even when I pop them the pressure remains. Just thought I'd mention this, just in case you've experienced anything similar or you got a nugget of info from Dr Afrin...
Hopefully hear from you soon.
regards,
Jamie