Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl New Mast Cell Research, Studies, and Trials >> New Mast Cell Research, Studies, and Trials >> Dr. Afrin's MCAS research study http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1353984827 Message started by Gumby on 11/26/12 at 14:53:47

Title: Dr. Afrin's MCAS research study
Post by Gumby on 11/26/12 at 14:53:47

I had my first appointment with Dr. Afrin today and wow, I was blown away. He said I had MCAS "in spades" but of course could not give me a formal diagnosis without lab work markers being positive. However he did ask me if I was interested in participating in a research study at MUSC on MCAS. Of course I said yes! The study is 100 MCAS subjects & 20 controls and blood is being drawn to identify # of mast cells circulating in the blood, blood levels of certain signals possibly involved in causing increases in in monocytes and reactive lymphocytes in the blood. They are also compare this to the CBC, gender, age race, symptoms, and known medical problems. The results will be analyzed to determine relationships between the above. Part of the reason I believe he may have asked me to participate is because I have already been diagnosed with both Interstitial cystitis AND Ehlers-Danlos hypermobility type. Of course this just speculation... I will be anxiously awaiting the results of both my own test results and the eventual publication of this study! It is funded by the Mastocytosis Society, inc. and other researchers are dr. Sally Self, Dr. John Lazarchick, and Dr. Betsy Hill. Hope this is good news.

Title: Re: Dr. Afrin's MCAS research study
Post by LindaMar on 12/04/12 at 10:42:59

Hi Gumby, I saw Dr. Afrin the same week you did. I, too, was included in that study. Are you diagnosed yet? I also saw him in Nov. I am officially diagnosed with MCAS. I wish I lived closer to SC, so that I could continue treatment there. I am really hoping that the hematologist I will see in NYC will have a clue about treating MCAS. :)

Title: Re: Dr. Afrin's MCAS research study
Post by Gumby on 12/09/12 at 07:32:03

I don't know if I am diagnosed yet. Many of the typical markers came back negative. My plasma histamine was mildly elevated but all the mediators for carcinoid and a pheochromocytoma came back very high. Right now. My docs are going to consult with Dr. Afrin & see if he thinks this is just MCAS or further testing should be done. Kind of alarming! :-*

Title: Re: Dr. Afrin's MCAS research study
Post by Joan on 12/09/12 at 19:38:03

Sometimes people do have high markers but don't have those diseases. Definitely contact him or his office and ask about this. You shouldn't have to worry. He might want to repeat the test or do additional tests to rule those out completely. It would be extremely rare to have both carcinoid and pheochromocytoma at the same time!

There are also experts in these diseases, and since they can be difficult to rule in or out, you might want to see an expert specifically in these diagnoses to get complete peace of mind.