Achilles2323 Posted March 15, 2013 Report Share Posted March 15, 2013 how do you test for Mast-cell activation disorders ??any 1 have any clue ?looking into it.... cant find much? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 15, 2013 Report Share Posted March 15, 2013 Dr Afrin diagnosed my son. He took 11 or 12 viles of blood and a 24 hour urine test(kept cold the entire time, including in transport). They checked his tryptase levels, prostoglandin D2, histamine and heperin. Those are the specific ones I remember, probably more since so many viles were taken. My son's heparin levels were the highest Dr Afrin had ever seen (8.5 times to high), which explains why when he gets a bloody nose it runs like a faucet.Dr Afrin also scratched my son's back and red welts remained for 10 to 15 minutes. Based on all the test results, history and symptoms he was diagnosed with MCAS. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted March 15, 2013 Author Report Share Posted March 15, 2013 Dr Afrin is located were?any clue of any in nyc or queens ny?what kind of doctor is he as well? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 15, 2013 Report Share Posted March 15, 2013 Dr Afrin is in Charleston,SC and he is an Oncologist/Hematologist. Here is a link to a powerpoint presentation he gave in Canada, plus a link to a good site.http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdfhttp://www.mastocytosis.ca/peliterature.htm Quote Link to comment Share on other sites More sharing options...
ophelialit Posted March 15, 2013 Report Share Posted March 15, 2013 Achilles2323,My MCAS was diagnosed by an immunologist in the Washington, DC area; he ordered MULTIPLE blood tests (my final report was 4 pages long), and, along with the common tests like metabolic panels and a CBC, he ran a huge panel of IGG, IGE, IGM, IGA and other mast cell-activating factors (my IGE levels were 3 times the normal value). He also tested a biopsy I'd had done during an EGD for the presence of mast cells; finally, I got the "back scratch test" as well, and the marks stayed for nearly an hour. It seems like most of the MCAS docs are immunologists by trade, but I know some of the best in the biz are hematologists as christyd noted. Hope this helps... Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted March 15, 2013 Author Report Share Posted March 15, 2013 wish i could find 1 near queens ny area ='/ Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 15, 2013 Report Share Posted March 15, 2013 Good luck, we travel 13 hours to see Dr Afrin. We have found a local doctor to help treat the MCAS through Dr Afrin, but he still wants us to go to SC every 6 months. So twice a year is better than 4 trips we made last year. We chose to travel the 13 hours to make sure the testing was done by someone who knows all about MCAS. The testing has to be done a very specific way, ie cold test tubes. Once we got the testing done, Dr Afrin also preferred us to find a local doctor to work through that he would advise. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted March 15, 2013 Author Report Share Posted March 15, 2013 thank you Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2013 Report Share Posted March 15, 2013 Christy,How is he doing on the ketotifen? Any better then the GastroCrom?Issie Quote Link to comment Share on other sites More sharing options...
Guest wishing&hoping Posted March 15, 2013 Report Share Posted March 15, 2013 Achilles2323,My MCAS was diagnosed by an immunologist in the Washington, DC area; he ordered MULTIPLE blood tests (my final report was 4 pages long), and, along with the common tests like metabolic panels and a CBC, he ran a huge panel of IGG, IGE, IGM, IGA and other mast cell-activating factors (my IGE levels were 3 times the normal value). He also tested a biopsy I'd had done during an EGD for the presence of mast cells; finally, I got the "back scratch test" as well, and the marks stayed for nearly an hour. It seems like most of the MCAS docs are immunologists by trade, but I know some of the best in the biz are hematologists as christyd noted. Hope this helps...Hi, Achilles,I'm in the DC area, too. Who did you see, if I may ask? Desperately looking for someone and some answers....Thanks,Adina Quote Link to comment Share on other sites More sharing options...
ophelialit Posted March 15, 2013 Report Share Posted March 15, 2013 Hi Adina,That was actually my post--his name is Dr. Mardiney, and here's his website: http://mardiney.com/He has locations all over DC Metro area--mostly in MD. He's in practice with his sons, so you have to specify that you want "the dad" when you call! :-)I've talked about him and how amazing he is (very old school, UNBELIEVABLY knowledgeable) on the forums many times, so if you search for his name, you can find all of those previous posts.Hope this helps! Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 15, 2013 Report Share Posted March 15, 2013 Adina,I see Dr. Mardiney (dad) too and he is awesome!Achilles,I don't know about NY but if you can get to Boston, I know there are a couple of well-known mast cell specialists at Tufts. I can not remember their names but I know if you look on the Tufts website you can find them. I think one of the last names starts with a "Th". Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2013 Report Share Posted March 15, 2013 Achilles,I don't know about NY but if you can get to Boston, I know there are a couple of well-known mast cell specialists at Tufts. I can not remember their names but I know if you look on the Tufts website you can find them. I think one of the last names starts with a "Th".Dr Theoharides --he also has a lot on the net --many articles, lots of research.Issie Quote Link to comment Share on other sites More sharing options...
Guest wishing&hoping Posted March 16, 2013 Report Share Posted March 16, 2013 Hi Adina,That was actually my post--his name is Dr. Mardiney, and here's his website: http://mardiney.com/He has locations all over DC Metro area--mostly in MD. He's in practice with his sons, so you have to specify that you want "the dad" when you call! :-)I've talked about him and how amazing he is (very old school, UNBELIEVABLY knowledgeable) on the forums many times, so if you search for his name, you can find all of those previous posts.Hope this helps!Thanks so much!!!Adina Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 16, 2013 Report Share Posted March 16, 2013 Hi Issie,We thought we were seeing a little improvement on the ketotifen, but not so much the last couple of days. I'm hoping maybe just a set back because of the weather change. Any change at all seems to knock him down. He isn't on full dose yet. It will be about two more weeks before he is on full dose, so hopefully this is going to help. We see Dr Afrin again at the end of April.Christy Quote Link to comment Share on other sites More sharing options...
issie Posted March 16, 2013 Report Share Posted March 16, 2013 Hi Issie,We thought we were seeing a little improvement on the ketotifen, but not so much the last couple of days. I'm hoping maybe just a set back because of the weather change. Any change at all seems to knock him down. He isn't on full dose yet. It will be about two more weeks before he is on full dose, so hopefully this is going to help. We see Dr Afrin again at the end of April.ChristyWell, hoping that it makes a difference. How do/did you see improvements? What is different over the GastroCrom?Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 16, 2013 Report Share Posted March 16, 2013 Issie,With GastroCrom he was still severely nauseated 24 hours a day and really never left his room. With the ketotifen, he is leaving his room more often(in the evenings) and being more social. He jokes around a bit more. We can tell by his behavior and interactions with the rest of the family. While the nausea is still there 24/7, he has a block of hours that he is more functional. While he still isn't feeling great enough to go out, it is a step in the right direction.Christy Quote Link to comment Share on other sites More sharing options...
issie Posted March 16, 2013 Report Share Posted March 16, 2013 That sounds like a massive improvement. We're grateful for any of the little things ---aren't we? What, if any, are the side effects?Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 16, 2013 Report Share Posted March 16, 2013 He is not one to get side effects. Things either work or they don't for him. The only medication that he can't take because of side effects are Nortriptyline(sp?) and Topomax. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 16, 2013 Report Share Posted March 16, 2013 Issie - Thanks for filling in the name. One of my POTSie things is being able to see a worn or name in my brain but not be able to say or write it. I just couldn't get it out!Christy's - I am glad you found something that might start helping your son. Every little bit seems to help. Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted March 18, 2013 Report Share Posted March 18, 2013 Dr Theoharides at Tufts in Boston does not see patients, as he is not licensed to practice medicine in the US, but he is one of the top mast cell researchers. Dr Castells is at Brigham and Women's in Boston. Here is a list of mast cell docs who sit on the TMS medical advisory board. http://www.tmsforacure.org/medical_board.php Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted March 18, 2013 Report Share Posted March 18, 2013 It is really helpful to see one of these docs who sit on the TMS medical advisory board. I can second the recommendations of Dr. Castells and Dr. Afrin. And it is worth traveling to see them. I've been seeing Dr. Afrin since October but had hoped to find a local hematologist to help. I found the top doc in the Tampa Bay area for SM. He is the medical director of the clinical research programs at USF. He is a top hematologist/oncologist at Moffitt Cancer center and sees more SM patients than anyone in the Bay area. My hope was to have him consult with Dr. Afrin and get treatment without driving 9 hrs to see Dr. A every few months.He was wonderful, knowledgeable and honest. He knew of Dr. Afrin and others studying MCAS and found my case very interesting especially the degree to which I am sensitive to drugs and chemicals. It appeared I am a lot more sick than most of his SM patients. He has no patients with Dysautonomia and has had no patients diagnosed with MCAS. He said, "I would be happy to treat you but if I were you, I'd drive to Charleston every few months to see Dr. Afrin."I share this just to say that if you really suspect MCAS it is important to be willing to travel to see docs who have experience in diagnosing and treating MCAS. Quote Link to comment Share on other sites More sharing options...
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