Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Hello all. A bit about me. http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1296870440 Message started by Jaxx on 02/04/11 at 13:47:20

Title: Hello all. A bit about me.
Post by Jaxx on 02/04/11 at 13:47:20

I live in South Carolina. My immune system problems started when i was around 6 months old. Constant visits to the doctors and emergency rooms as a child. After a while i learned that this made my mother very angry and i would hide symptoms for as long as i could. In fact I'm very good at hiding my condition. I 've had to force myself to keep coworkers informed, but it is hard to explain a condition where anything can make you sick. Sometimes people think im lazy or a hypochondriac, and i find that very hard to deal with. The Drs in south carolina are not very good, but my Gp has bben very forthright with me. He suggested that i start searching for specialists on line because the two allergists in town gave him feedback that suggested that they si ply weren't listening to me. I'vehad a few false starts, but this forum is kind of unique in that moderatirs seem to br very honest when there doesn't seem to be mast cell involvement as well as when there does. Thank you for being here.

Title: Re: Hello all. A bit about me.
Post by DeborahW, Founder on 02/04/11 at 14:26:39

Welcome Jaxx! I am so glad that you have found us! Enough with hiding those symptoms, at least around here. We are totally used to them and know exactly how you feel about having an invisible illness.
Most people don't know I have an illness, and I look totally healthy. Even the friends who do know that I have a "rare illness" have no concept of how sick I can be. I would say that only my husband and best friend truly grasp how serious my condition is.

My personal suggestion is for you to email Dr. Akin for assistance. You have probably read about him on this forum. It is not uncommon for us to have our local doc and then have a specialist, like Dr. Akin, direct our local docs when problems arise. I can give you his email if you would like.

Please enjoy the forum and jump into any discussions which interest you. You will have a lot to choose from!

Title: Re: Hello all. A bit about me.
Post by Jaxx on 02/04/11 at 14:37:18

I would definately like Dr Arkin's email. I need all the help I can get!

Title: Re: Hello all. A bit about me.
Post by Lisa on 02/04/11 at 23:03:33

Hi Jaxx! Welcome aboard!

You've got an authority who is much closer to you that Boston! How's Richmond, VA for you sound? We've got a couple of patients here who should have also seen him by now. His name is Dr. Lawrence Schwartz and he's an excellent immunologist and authority on mastocytosis. He also knows all about the non-clonal MCAD and can go over you and investigate this situation of yours. So I highly recommend your going and seeing him.

Lisa

here is his contact information.

Lawrence B. Schwartz, M.D., Ph.D.
P.O. Box 980263
Richmond, Virginia 23298-0263
Phone: (804) 828-9685
E-mail: lschwart@vcu.edu

"I see a significant number of patients with definitive or possible
mast cell disorders, and am delighted to continue to do so. Prior
workup information is important for me to have. The tel # for an appt is 804-628-4432." from an email to me from Dr. Schwartz

Title: Re: Hello all. A bit about me.
Post by Jaxx on 02/05/11 at 09:48:52

Oh wow, thank you. My doctor's here will be more than glad to get whatever he needs for a workup. I think they find my problems as frustrating as I do.

Title: Re: Hello all. A bit about me.
Post by DeborahW, Founder on 02/05/11 at 10:02:20

I still vote for Dr. Akin. I will private message you his email. He can work with your local doc quite easily....

Title: Re: Hello all. A bit about me.
Post by Jaxx on 02/09/11 at 04:08:26

Thanks for the information. I contacted him, and he had some recommendations for my GP. He contacted me the next day! Wow. What a nice guy.

Title: Re: Hello all. A bit about me.
Post by Lisa on 02/09/11 at 05:38:51

Which doctor? Akin or Schwartz?