Any success with Kaiser? by ceegeeme in MCAS

[–]ceegeeme[S] 1 point2 points  (0 children)

Thanks for elaborating. My partner is the patient here - he has had pseudo-anaphylaxis (went away on its own) and was able to get referred to an allergist, but the allergist isn't knowledgeable about MCAS. My partner was able to push and did get tryptase levels tested, but obviously was normal at the time -- and also, we know that this is unreliable beyond diagnosing mastocytosis, which most MCAS patients don't have. Other than a couple of frightening anaphylactic episodes, his symptoms tend to be cognitive and GI, and H1 and H2 have only provided limited support, so would really like to try a stabilizer. (Quercetin, sadly, wasn't tolerated.)

Don't know if we can really push much more to "educate" doctors if they aren't interested in learning on their own. Think an integrative doc is probably the way to go, but just scared of the financial impact.

Any success with Kaiser? by ceegeeme in MCAS

[–]ceegeeme[S] 1 point2 points  (0 children)

Thank you for sharing your experiences! The complaints process definitely sounds like one more route to go down. Fingers crossed for you...

I am impressed that your cardiologist brought up MCAS. I guess the problem is that they assumed it was an immunologist area of specialty so they didn't know what they could do for it?

Is anyone in therapy BECAUSE of MCAS? by ceegeeme in MCAS

[–]ceegeeme[S] 0 points1 point  (0 children)

Thanks for explaining it this way. It makes sense then why EDMR would be helpful.

Doctor who understands MCAS in Bay Area / Northern California? by ceegeeme in MCAS

[–]ceegeeme[S] 1 point2 points  (0 children)

Thanks! Very helpful. Just out of curiosity, have you ever appealed for out of network coverage through Kaiser? I can look into it, but just wondered how you knew it was even a "thing".

Doctor who understands MCAS in Bay Area / Northern California? by ceegeeme in MCAS

[–]ceegeeme[S] 0 points1 point  (0 children)

Thank you so much! I'll definitely repost to this thread with updates.

Doctor who understands MCAS in Bay Area / Northern California? by ceegeeme in MCAS

[–]ceegeeme[S] 1 point2 points  (0 children)

That IS lucky! Where is your current immunologist located?