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New and looking for a PC doc in Massachusetts (Read 4273 times)
PatP
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New and looking for a PC doc in Massachusetts
01/09/14 at 15:55:56
 
Hi,

I'm new to the mast cell disorders world and am really glad the forum is here.

I just learned about MCAD a couple of weeks ago and was amazed to learn that many of the symptoms I've had over the years are common in MCAD. I'm in my 60s and some symptoms started in my teens, with new ones popping up every decade it seems. No one's ever been able to expain why I have so many different medical issues, across so many different body systems.

My symptoms and diagnoses have included extensive allergies, IBS, GI tract pain, shortness of breath, rhinitis, autoimmune dry eye, eye pain, blurred vision, lactose intolerance, salicylate sensitivity, chemical sensitivities, flushing, tinnitus, eczema, osteoporosis, costochondritis, lymph node swelling, autoimmune hypothyroiditis, fibromyalgia, fatigue, depression, brain fog, migraines, mitral valve prolapse, endometriosis, PMS, cervical disk problems, and sleep disturbances.

I'm kind of excited that I might finally have some answers about why I go through all this stuff, and effective treatments. Eliminating exposures over the years has reduced some of my symptoms, but not nearly enough. This past week I started using Allegra every day, and I'm happy to see it's helping my breathing and brain fog.

I live in the Boston suburbs so called the Brigham & Womens Mastocytosis Center. They're sending me some info, but beyond that I'm not sure what to do since I don't currently have a primary care doctor.

I was told by Brigham & Womens that if I send Dr. Castells info about my medical history there's a chance Dr. Castells would order the tests since I'm local. But it's not definite plus I really do need a PC anyway.

Does anyone have any recommendations for PCs north or west of Boston who have MCAD patients, or at least have an open mind? (And hopefully a good bedside manner!)

Thanks for any help...

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« Last Edit: 01/10/14 at 06:37:58 by PatP »  

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kesasur
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Re: New and looking for a PC doc in Massachusetts
Reply #1 - 01/10/14 at 02:43:30
 
Hi Pat and welcome.
I live in MA as well but in the Western part of the state. I found an allergist/immunologist who was recommended by Brigham and Woman's so the "go to" guy in my area.  I don't know of anyone out your way.
I'm thrilled to hear allegra is helping you. It was the first thing I also took a few months ago that made any difference in my symptoms, so I understand that any relief is wonderful!  
If you are able to send Dr. Castells your info and she will see you I think that is the way to go. But also call back and ask who they recommend closer to you. I'm sure they have a list of MDs who refer to them that they can recommend to you.

Kelley
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PatP
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Re: New and looking for a PC doc in Massachusetts
Reply #2 - 01/10/14 at 06:58:49
 
Thanks, Kelley.  Smiley

Western Mass is so beautiful... haven't gotten out there in a number of years. If meds for MCAD keep improving my symptoms and energy level, I'd love to start traveling around again when the weather's nice.

That's a good idea about asking Brigham & Womens for a recommendation. There are lots of doctors around here (near Rt 495), but I've had too many bad experiences with doctors in the past to feel comfortable randomly picking one.

One of the last specialists I saw was a gastroenterologist at Tufts New England Medical Center who (1) thought I had an eating disorder because I avoid eating foods I know trigger me and (2) said I was "over-diagnosed" when he saw the long list of diagnoses that other doctors had given me. I was sent to him by a rheumatologist at Tufts who, although I liked her, didn't think foods caused many problems.

I hope someday no one will have to go through these experiences, and diagnosing most things will be easier and quicker.
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