My 9 year old son came down with sudden and severe POTS because of a Mast Cell Activation Disorder. Dr. Abdallah in the DC area was wonderful in diagnosing problem and Alec takes medications for both. I'd like to find a doctor in the DC or Florida area who can help us with the Mast Cell Activation Disorder specifically. I still live in VA, but I'll be moving to the coast to help him get away from pollen, so a good doctor in either place would be great. Thank you.
Hello. My teenage daughter just saw Dr. Abdullah for a POTS disagnosis. She was diagnosed as a 3-yr old as having a Mast Cell Disorder that has been pretty much dormant fot the last 5 years. Can you tell me what the connection is between the two?
This is so encouraging to me! We have an appointment with Dr. Abdallah in August (we actually had one yesterday, but needed to reschedule due to insurance issues). I've only heard one other person recommend him and the cardiologist we're seeing now said many negative things about him--although very vaguely, and wouldn't give me details.
I'm going to PM both of you for more detail.
I love this forum!!
Just wanted to chime in that i am trying to see Dr. Cem Akin and Dr. Mariana Castels who are both now at Brigham & Women's (Cr. Akin used to be in Michigan) who are experts on Mast Cell Activation Disorder and also have been observing its strong correlation with POTS. I was dx'd with pots by Mayo Clinic but have improved significantly since beginning a trial of H1 and H1 histamine blockers for suspected mast cell issuess (NOT mastocytosis). The Mayo Clinic said they couldn't detect any mast cell problems but Dr. Akin and Dr. Castels are reporting that trad'l testes (tryptase levels etc.) may not always identify the problem in some people. I think i may be one of those people as getting the Mast cells under control seems to be helping the pots! I'd love to know if you've found anything more or what your experiences have been. Right now for the Mast Cells I take Pepcid 2 x day, Singulaire and Allegra in the a.m. and Zyrtec in the evening (with the 2nd pepcid dose). I am also taking quercitin -500 mg 2 x day.
My daughter and I have POTS. She also has an elevated tryptase (19). Mine is pending. My oldest daughter also has a mast cell issue and elevated tryptase. I hope they are entertaining the possible connection. In my case, I had a lot of the mast cell symptoms and then my illness seemed to settle into POTS. I have had it since the early 90s.
We have been in contact with drs in Boston but have not been seen yet. We also have a pending appt with Dr. Abdallah. I was hoping he would be familiar or open to the mast cell side of things.
When I suspected I might have Mast Cell Activation disorder and wanted testing, the doctor I had at the time did not feel there was any point in testing me for it, because even if I did have it, the treatment would exacerbate my P.O.T.S..
I have been sick for the past 2 years. I have been diagnosed with POTS, but also had other symptoms that my POTS drs didn't feel was related. After extensive testing, I went to Brigham and Women's in Boston to see Mast Cell drs and have been diagnosed with mast cell activation disorder. I too am on treatment for it now. It has not exacerbated my POTS if anything it has made me feel a bit better. I am not great, but definitely better then when this whole thing started. They do feel there is some connection with POTS and mast cell. I have met a few people who actually have both. It is worth looking into.
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