POTS + mast cell activation

[mich91]

I have POTS with a Mast Cell activation disorder and I was wondering if anyone knows of any doctors in the Boston area that are good with POTS. I was diagnosed in Cincinnati, but I moved to Boston a year ago for college. I currently just see my doctors back home, but it is getting to be difficult.

[Rebelkerrie]

We traveled from wisconsin to virginia to see the doctor who is at the heart institute of america for her POTS...... she had an episode of flushing while there, and he promptly diagnosed her with Mast Cell Activation Disorder, doing a few tests on her arms and legs. How awesome it was to see her get help from someone after 3 years of bouncing from one doctor to another..... could not explain her abdominal pain.  Good Luck!

[NYCpots]

Sorry - one more question.....for those who have been tested - did you get a test directly after  a flushing episoide? I had one done that was negative but it was a 24 hour test and NOT during a flushing episode (Mayo Clinic) and when i mentioned that this test wouldn't reflect the situation when i was actually having a problem (ie flushing rxn) they dismissed it. I'd LOVE any thoughts....thank you!!

[NYCpots]

Thanks so much.....i am going to try to find an allergist with some inkling about POTS (i know that may be asking the moon!) as the flushing is becoming impossible....I'll report back if there's any advice for folks generally....stay tuned!

[mich91]

For the Mast Cell Activation part - talk to an allergist. Tell them that you have posts and of your concerns. Optimally you would want to see an allergist who knows about POTS to figure out the best medicine combination, but you should be able to get the actual diagnosis from any allergist. Good luck!

[NYCpots]

Hi there,

I have been diagnosed with POTS but am beginning to suspect a mast cell activation disorder....where / who / how did you get tested for it? Mine is episodic.....but really annoying and disabling. Thank you!

[mich91]

Thanks for the help! I think I will try to get an appt with Dr. Castells.

[Heiferly]

Dr. Mariana Castells at Brigham and Women's in Boston is one of the top MCAD experts in the country, and anecdotally speaking, I know of several POTS patients who have gone to see her for their MCAD so she likely has at least a peripheral knowledge of POTS.  I would say your best bet is probably to try to get in to see Dr. Castells for the MCAD and then ask her who she recommends you see for POTS.  Truth be told, I think we've batted the subject around here on the forum before and haven't come up with the name of a good POTS expert in that area that anyone knows of, but you may have luck with the "in" of going through Dr. Castells first.  (I could be recalling incorrectly, though, so if any of our community members in Mass. knows of a doc in that area, PLEASE do correct me!)

Other than that, the usual advice applies:  head for the largest teaching hospital you can find and look for an electrophysiologist-cardiologist or neurologist who has experience/knowledge re: POTS/dysauto.  You can usually cold call secretaries at their offices and ask if they have any expertise in this area and they will ask the docs and call you back within a day or two to let you know if you'll fit in well at their practice.  

One other option is to go to one of the hospitals in NYC that has a fully-outfitted dysautonomia clinic.  If I recall correctly from talking to my best friends in college who were from Boston and NYC, respectively, you can easily get back and forth between the two cities by train.  You may find that to be a good option for you if you want to be seen at one of the top dysautonomia centers in the country.  Here's the contact information for those:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196