sj75 Posted November 18, 2009 Report Share Posted November 18, 2009 I just wondered what MCAD is? ive seen it mentioned on a few posts and am trying to get to grips with all the different terminology on here at the moment.Thanks Quote Link to comment Share on other sites More sharing options...
Maisie87 Posted November 18, 2009 Report Share Posted November 18, 2009 I believe it means Mass Cell Activation Disorderanyone please correct me if I'm wrong.* Quote Link to comment Share on other sites More sharing options...
sj75 Posted November 18, 2009 Author Report Share Posted November 18, 2009 wow, thanks for that.Do you know if and how it relates to POTS? Quote Link to comment Share on other sites More sharing options...
erik Posted November 18, 2009 Report Share Posted November 18, 2009 Here is a superstar thread on MCAD, research wise:http://dinet.ipbhost.com/index.php?showtopic=11422I don't personally know any more than the bits mentioned on this forum... though I've wondered if I might have some signs worth following up on. Here are a couple other threads that stood out above the rest for me:Mcad Flushing, What is it like?Pots, Asthma And Mcad, How are they connected? Are they connected?Really Red Eyes, And Bladder Control Issues....., Anyone else?A forum search for MCAD will turn up plenty of other topics too. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 19, 2009 Report Share Posted November 19, 2009 I've got it and it definitely contributes to my dysautonomia. The good news is that controlling it IMPROVES my dysautonomia. PM me if you have any questions.Julie Quote Link to comment Share on other sites More sharing options...
MissPatient20 Posted November 19, 2009 Report Share Posted November 19, 2009 What is the treatment for it? Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 19, 2009 Report Share Posted November 19, 2009 Avoiding triggers (if you know what they are ) and meds. Check out The Mastocytosis Society web site to learn more:www.tmsforacure.org Quote Link to comment Share on other sites More sharing options...
sj75 Posted November 19, 2009 Author Report Share Posted November 19, 2009 Thanks guys, ive got so much to learnI think i may have this!!!I am going to do some more research and then approach my cardiologist.Im due to have the flu jab tommorow, is it safe to do so with this condition (i worry as i react to loads of medications)?? Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 19, 2009 Report Share Posted November 19, 2009 We've had loads of jabber about this one, search the site to learn more. BUT, as far as MCAD & a flu shot.....go by your past history. If you've not had a problem in the past, there's a great chance you won't this time. I've only had one flu shot in my life & I had NO problems at all.Julie Quote Link to comment Share on other sites More sharing options...
sj75 Posted November 19, 2009 Author Report Share Posted November 19, 2009 Julie,Its interesting to see on your signature that you are on antihistamines and singulair, im trying to work out how it all fits in but i have asthma, food allergies and allergic rhinitis and am wondering how much of an impact taking control of my allergies will have on my pots?Im so new to this and have got soo much to learn, i cant help but think this is a condition that you have to resrarch and act upon yourself as the health professionals seem to know so little about it, im seriously thinking of printing off the articles and sending them to my dr! Quote Link to comment Share on other sites More sharing options...
MissPatient20 Posted November 19, 2009 Report Share Posted November 19, 2009 After poking around the website Mack's Mom listed, I found information on treatment and was delighted to see Ketotifen on the list!I'm taking Ketotifen for suspected "Leaky Gut Syndrome" because I have such bad food sensitivities/allergies that I am down to only being able to eat about 8 different foods. But what I noticed is that if I forget a dose or take less than the day before, the next day my POTS/dysautonomia is MUCH worse!I wish I could find a doctor who knows about this disorder! I don't think my PCP would even test me for it...but if I ask...what should I ask my PCP to test? Quote Link to comment Share on other sites More sharing options...
erik Posted November 19, 2009 Report Share Posted November 19, 2009 (edited) BTW, ketotifen may be affecting vasoconstriction indirectly... I think by potentiating dilation (could be wrong/backward) but then it could go the other way when it wears off. It is apparently sometimes combined with an asthma med to promote activation of beta-adrenergic receptors or something along those lines (not sure if it enhances the asthma med or if it counters side-effects +++ and allows lower dose to be effective). Anyway, Beta-Receptors are key to controlling cardiovascular dilation/constriction amongst other things. Edited November 19, 2009 by Erik Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 19, 2009 Report Share Posted November 19, 2009 After poking around the website Mack's Mom listed, I found information on treatment and was delighted to see Ketotifen on the list!I'm taking Ketotifen for suspected "Leaky Gut Syndrome" because I have such bad food sensitivities/allergies that I am down to only being able to eat about 8 different foods. But what I noticed is that if I forget a dose or take less than the day before, the next day my POTS/dysautonomia is MUCH worse!I wish I could find a doctor who knows about this disorder! I don't think my PCP would even test me for it...but if I ask...what should I ask my PCP to test?Ketotifen is a powerful mast cell stabilizer. That could be helpful if you have real food allergies (confirmed by RAST) OR if your mast cells are overly reactive. However, the fact that it's helpful is very telling. Another mast cell stabilizer that's very helpful with folks who react to many foods is gastrocrom. Ask your doc about that one.I have to use ketotifen eye drops every day or the whites of my eyes are bright red.Yeah, my autonomic stuff is awful when my MCAD is flaring. When you have MCAD you basically have allergic reactions (even though I'm not allergic to anything !) that cause your blood vessels to leak out, which in turn lowers blood volume, BP, and raises your HR. Controlling the MCAD has improved my dysautonomia tremendously.Hope it helps yours too-Julie Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 19, 2009 Report Share Posted November 19, 2009 Julie,Its interesting to see on your signature that you are on antihistamines and singulair, im trying to work out how it all fits in but i have asthma, food allergies and allergic rhinitis and am wondering how much of an impact taking control of my allergies will have on my pots?Im so new to this and have got soo much to learn, i cant help but think this is a condition that you have to resrarch and act upon yourself as the health professionals seem to know so little about it, im seriously thinking of printing off the articles and sending them to my dr!I think all dyautonomia docs agree that controlling your allergies and asthma will definitely have a very positive impact on dysautonomia. The whole MCAD DX is confusing. I have very severe allergy & asthma symptoms, but I don't have any allergies or asthma per skin or RAST testing. I just have all of the symptoms: hives, flushing, constant runny nose, tight throat, tight chest, wheezing, even anaphylaxis. Some folks with MCAD also have real allergies. Sorting it out is tricky, but a good allergist should be able to help. BTW, I also have chronic rhinitis, but mine is non-allergic, which is commonly found in dysautonomia patients. Printing off article to show your doc is a great place to start. A good allergist is a great second stop. If you want help finding a masto specialist, a great idea if just for the official DX, I'd be happy to help you find one. Like dysautonomia docs they are pretty rare. Just tell us which state you live in & folks here will help.All the best-Julie Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted November 21, 2009 Report Share Posted November 21, 2009 (edited) Just tell us which state you live in & folks here will help.I need one!!! I'm in Youngstown Ohio. Edited November 23, 2009 by flop Quotation removed, please use the "add reply" button at the bottom of the page Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 23, 2009 Report Share Posted November 23, 2009 Notgivingup-I can't think of a masto researcher offhand in Ohio. I THINK (could be wrong) that we have a member, named Linda Joy, who was DXed with MCAD, and found a good doc in Ohio. I haven't seen her posting recently. Consider sending her a PM (links to her personal E-Mail) and see if she can recommend someone. She started out with a doctor in Ohio and then moved on to a masto researcher at Brigham and Women's in Boston, Dr. Marianna Castells. I also belong to an international listserve comprised of MCAD & mastocytosis patients (and those seeking a DX.) Perhaps someone there could recommend a masto ressearcher in Ohio. Let me know if you want a link to that site.Julie Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted November 23, 2009 Report Share Posted November 23, 2009 (edited) Thanks, yes I'd love the link. Edited November 23, 2009 by flop Quotation removed, please use the "add reply" button at the bottom of the page Quote Link to comment Share on other sites More sharing options...
erik Posted November 23, 2009 Report Share Posted November 23, 2009 I have to use ketotifen eye drops every day or the whites of my eyes are bright red.Yeah, my autonomic stuff is awful when my MCAD is flaring. When you have MCAD you basically have allergic reactions (even though I'm not allergic to anything !) that cause your blood vessels to leak out, which in turn lowers blood volume, BP, and raises your HR.My eyes get nasty red at times. I think allergy eye reactions are said to be characteristically itchy. Is the MCAD red-eye also itchy?Mine aren't, just red (and a little dry) usually kind of progressively worse... then nasty looking at night. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 23, 2009 Report Share Posted November 23, 2009 Thanks, yes I'd love the link.https://listserv.surfnet.nl/scripts/wa.exe?...e%40charter.netI think I've linked you to the home page where you can peruse archives. Somewhere on the site you can find a place to join so you can post questions and ask members for Ohio doctors. Best of luck-Julie Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 23, 2009 Report Share Posted November 23, 2009 My eyes get nasty red at times. I think allergy eye reactions are said to be characteristically itchy. Is the MCAD red-eye also itchy?Mine aren't, just red (and a little dry) usually kind of progressively worse... then nasty looking at night.My eyes don't itch, Eric. They are just all red. If I'm really symptomatic, my eyes are even redder. The eye drops help. I use them AM & PM. I buy them at Wal-Mart. They are their brand substituted for Zaditor. Really helps! Pataday was the best (only needed once every 24 hours), but soooooo expensive- $50 for a month's worth and I always ran out before the end of the month- yikes! I called them liquid gold Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 23, 2009 Report Share Posted November 23, 2009 I just made myself dizzy trying to read the posts and links about this. I have a terrible chemical sensitivity, as well as flushing and some of the other symptoms. I was tested for Mast Cell Activation Disorder through 24 hour urine, but I don't think the test was done right because the lab wasn't able to test for what the Dr asked for, but something related instead. Mastocytosis (and its relatives) seem impossible to test for -- skin biopsies, bone marrow tests? This just seems to be another one of those impossible diagnosis. It was hard for me to read all of that -- maybe I am missing something? And what type of Dr. do you see for this? Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 23, 2009 Report Share Posted November 23, 2009 Hi Naomi,You're right in many respects. MCAD is as difficult a DX to get as dysautonomia. Wish I could tell you differently The best place to start would be to download any pertinent research articles (that you think best describe you) and show them to your PCP. Depending on your symptoms, your next stop should be with an allergist who can fairly easily rule out mastocytosis with a blood test checking serum tryptase levels. If that's normal, then you could persue a MCAD DX. It's best to do a 4 hour urine test following a pretty severe episode (possible anaphylaxis/flushing/etc.) to check for methylhistamines. Ideally, you should carry that order with you in your purse so that you have it handy when you need it. Unfortunately, many allergists barely recognize MCAD as a DX. It is poorly understood and diagnostic criteria is not standardized. The World Health Organization (WHO) is set to tackle it/standardize diagnostic criteria in 2010. Once that's done, things should get better for the poor patient unlucky enough to deal with this.BMB and skin biopsies are only necessary if your serum tryptase is always elevated. Otherwise, MCAD can be DXed through urine/blood tests checking for methylhistamine and prostaglandin D-2. A masto researcher (specialized allergist) also takes a careful history, paying special attention to how you react with and without certain meds. I'm sorry it isn't any easier. If you have a good doctor to help you with your autonomic issues, they will be aware of the MCAD connection. Apparently, the folks at Mayo, Vanderbilt, and even Dr. Blair Grubb recognize and treat this connection.Julie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 24, 2009 Report Share Posted November 24, 2009 Julie,Ahhh..., relief, an easy to understand explanation. Thank you. I see you have the MCAD diagnosis. How did you get the diagnosis?Naomi Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 24, 2009 Report Share Posted November 24, 2009 I saw a masto researcher at Brigham & Women's in Boston named Dr. Marianna Castells. I found her via the Masto-Med listserve. I live in Northern GA. This was a one time visit for a DX. I stayed for a few days and did lots of tests, etc. I have a great local allergist (formerly of Mayo) who treats me here. I consider him my PCP as all of my symptoms seem to be mediated by my overreacting mast cells Having a definite DX, an emergency protocol, etc. makes me feel safer. Treating the MCAD has hugely improved my autonomic issues. I can relate to your frustration. Tell us where you live. Maybe somewhere here can help you find a doctor.Julie Quote Link to comment Share on other sites More sharing options...
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