Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Doctor in Pittsburgh area? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1320782911 Message started by m0xie on 11/08/11 at 08:08:31

Title: Doctor in Pittsburgh area?
Post by m0xie on 11/08/11 at 08:08:31

Does anyone have any recommendations for a good masto doctor (or a doctor familiar with mast cell disorders) in the Pittsburgh area? I don't have a diagnosis yet but unfortunately am not able to travel far right now in order to see one of the researchers.

If there isn't anyone around Pittsburgh, Cleveland is about a two hour drive for me, is there anyone good at Cleveland Clinic?

Thanks!

Title: Re: Doctor in Pittsburgh area?
Post by Lisa on 11/09/11 at 12:24:25

Hey Moxie, I made a reply to this in the other thread. Again, to the best of my knowledge, there isn't anyone.

The ONLY one who was even close was Dr. Leonard Bernstein in Cinncinatti, but he has retired and his son is not up to par with masto. Cleveland Clinic is not good either. Your closest authority is Dr. Lawrence Schwartz in Richmond Virginia. Since I know that drive, it's a 5hr drive to DC and then 2 more down to Richmond.

Lisa

Title: Re: Doctor in Pittsburgh area?
Post by m0xie on 11/10/11 at 02:12:43

Hi Lisa,

Thanks for your reply. I got an appointment with Dr. Afrin in South Carolina. It's a bummer there aren't more doctors familiar with mast cell disorders. :( I hope that changes soon.

Title: Re: Doctor in Pittsburgh area?
Post by Lisa on 11/10/11 at 06:07:00

I'm sure it will now. The MCAS diagnosis is a much more encompasing diagnosis and there are a great deal more people with this form of MC disorder than the very limited SM. Once doctors begin to disseminate this diagnosis, it will stir more interest and knowledge.

Doctors don't know about mastocytosis because so very few people are affected by it. Mastocytosis is an orphan disease that affects perhaps 1 in a half million people! In the US alone they thing that perhaps there are no more than 20,000 patients. They say if a doctor sees ONE mastocytosis patient in his entire career he can consider himself fortunate! Why would any doctor study about a disease that chances are he will never, ever see? Makes sense, right?! Yet, what about all of those patients who were bumped out of the mastocytosis diagnosis who don't quite "fit in"?

It's very possible that MC disorders are much larger in patient group. But it's going to take TIME for this to be known and talked about. MC research is becoming a hot item and the more research being done into the MC and it's function and effect upon the health, the more doctors will become aware and interested and this will eventually spread out to the diseases themselves.

So, be patient Moxie, it will.

But the real issue here is YOU and your needs for attention...NOW. So, since you've made the best decision in favor of your health, the issue isn't to find a doctor to diagnose you, but one who will support that doctor who does. So, do a bit of poking about trying to find one, but don't get too worried about it. Yes, Dr. Afrin needs someone to support him, but it may be easier to see him FIRST and then, like Kim and the others, seek out to find someone after you've got his professional opinion supporting this theory. Some doctors may not take too keenly your seeing them based upon a suspicion and will only want you after there is another doctor who is guiding the boat.

So, this is something to consider.

Lisa

Title: Re: Doctor in Pittsburgh area?
Post by m0xie on 11/10/11 at 08:28:29

I saw my family doctor today and she agreed to order most of the labwork, so that's a good start. I gave her some info on mast cell disorders and said I had been in contact with Dr. Afrin and have an appt with him in a few months. She said she would be willing to work with him once I get a diagnosis, so that's a good start. I may end up looking for a hematologist or someone locally also, but I'm going to wait until after my appt with Dr. Afrin first.

Incidentally, my family doctor today said she just had another patient last week who was taking about mast cell disorders, so I'll take that as a good sign that there is indeed a raising of awareness happening.