micheller Posted January 2, 2013 Report Posted January 2, 2013 I'm pretty sure I have it. I fired my last neurologist so I'm not seeing anyone right now. Who would be the best specialist to have knowledge and test for mast? Quote
Christy_D Posted January 2, 2013 Report Posted January 2, 2013 We take my son to Dr Afrin in SC. We are real pleased with him. He is very knowledgable and has great bedside manner. Quote
Katybug Posted January 2, 2013 Report Posted January 2, 2013 Immunologist or hematologist. But like all specialties, MCAD is kind of a specialty within a specialty. ...just like POTS is within neurology or cardiology. Quote
k&ajsmom Posted January 2, 2013 Report Posted January 2, 2013 Good question, I wish I would have thought of it. I have an appointment in June with Dr. Chemali and he is a neurologist specializing in autonaumic dysfunction. I just assumed he would be informed on mcas...maybe I need to look into that before I put all my eggs into that basket. Im pretty sure thats whats going on with me too and my pcp has never heard of it relating to pots.Thx for posting this, u may have saved me some time. and Im sorry ur haivng to go through a doctor change. It can be frustrating but it can also be hopeful so good luck in ur search =) Quote
jpjd59 Posted January 2, 2013 Report Posted January 2, 2013 We took my daughter to see Dr. Gotlieb at Stanford (a hemotogist who speciaizes in mastocytosis). My daughter has POTS and we were convinced that she had a mast cell disorder because she had all the symptoms. It turns out that she does not have a mast cell disorder but, instead, a problem with her immune system (caused by a virus which started this whole thing). I had also e-mailed Dr. Afrin and he was very helpful in discussing with me what tests her primary doctor should run to start the process to see if she had a mast cell disorder.Good luck!! Quote
micheller Posted January 2, 2013 Author Report Posted January 2, 2013 Thanks! I do have a hematologist for severe anemia. I should call and see if he knows anything about this. It's definitely hard to find a dr that knows anything about these types of disorders. It would be great if I lived closer to one of the well known drs. Quote
Kellysavedbygrace Posted January 2, 2013 Report Posted January 2, 2013 Found this great blog post on Mast Cell disorders including several helpful links. Here it is:http://stoppotsvirginia.blogspot.com/2012/07/find-your-pots-cause-wide-world-of-mast.html?showComment=1357095111361&m=1 Quote
micheller Posted January 2, 2013 Author Report Posted January 2, 2013 Thank you for posting that link! I have almost every symptom on that list. I got really excited when I searched a few terms and found a name for the red spots I get, telangiectasia! I knew they were blood vessels but didn't know the name. If anyone would know the name to these other spots, that would be even better. They are about dime size, always on a joint in my fingers (top or bottom of hand), itch and hurt at the same time. But they don't hurt on the surface, they make my joint hurt. Usually last a few days to 2 weeks. They kind of look like a single hive. I've went to my pcp before pots diagnosis and she was clueless. Quote
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.