Victoria Posted March 22, 2011 Report Share Posted March 22, 2011 I have a dermatology appt. tomorrow morning for some pre-cancers, but I plan to ask her about MCAD. Typically speaking, how often will a dermatologist be educated about it, and what (if any) type of testing could a dermatologist do to rule on MCAD?Thanks much. Quote Link to comment Share on other sites More sharing options...
songcanary Posted March 22, 2011 Report Share Posted March 22, 2011 I talked to my allergist about this the other day. He said he is willing to test me for it with a serum tryptase level. He said in his heart he doesn't want me to have it, because it can be pre-cancerous, but he also said that he thinks it might be more common in patients than we realize. I do hope your dr. can find some answers for you. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 22, 2011 Report Share Posted March 22, 2011 Hi Victoria,In your quest for an MCAD DX, your doctors will first have to rule out mastocytosis, itself. With mastocytosis, the body has too many mast cells. In MCAD, the body has a normal number of mast cells, they are simply over-reactive. The first step in ruling out mastocytosis is to check your serum tryptase level via a blood test. If that is high, there is a good chance you have some form of mastocytosis. (It could also indicate a recent episode of anaphylaxis.) If it is low, which it most likely will be, you can begin your quest for an MCAD DX. There are 2 major skin irregularities associated with mastocytosis, (not MCAD.) These are what a good dermatologist will be looking for:Urticaria Pigmentosa http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002437/TMEP http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=234172831Associated with both mastocytosis & MCAD is another condition called Dermatagraphism http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=22 This occurs when your skin becomes red and raised after a light scratch. You are very smart to begin looking for this condition with all of your doctors as it can affect almost every body system. All the Best-Julie Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 22, 2011 Author Report Share Posted March 22, 2011 Very interesting photos, and thank you for the explanation, Julie. I flush and have uticaria when I'm too warm, ill, or get emotional. The pressure urticaria -- I thought that was a normal occurrence. No? I also have medically documented telangiectasia in various places. I may as well breeze it by the dermatologist, seems like a reasonable starting point. Thanks again for the great info and photos! Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 23, 2011 Report Share Posted March 23, 2011 Me too, with everything you described. I also have oodles of telangiectasias, but apparently not TMEP. Good luck tomorrow- tell us how it goes!Julie Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted March 23, 2011 Report Share Posted March 23, 2011 Another me too - especially the flushing, etc. I also have light brown spots, but apparently not UP. My arm looks an awful lot like the photo on the link above of "diffuse cutaneous mastocytosis". Had a bad anaphylactoid episode last night and another tryptase test today. It'll be interesting to see if anything shows up this time.I'd also like to hear how things go, Victoria. With Julie's med advice I have had a lot of improvement in the severity of my symptoms - hope it works for you too. Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 23, 2011 Author Report Share Posted March 23, 2011 Sarah,I've had a huge improvement in my symptoms with Claritin, Benadryl and Zantac. I'm happy to hear you have too, woo-hoo!For the flushing, rash, etc., my dermatologist is ordering two tests that I haven't had drawn before. She knows! She also knew what my triggers were. I feel like I'm moving closer and closer to a diagnosis. But even if a definitive diagnosis can't be made, at least I know what gives me some relief for now, and I'm thankful for that.I did get a bit of bad news at my appt. I have basal cell carcinoma on my face and probable melanoma on my leg. Oh, heck. It's always something, isn't it? Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 23, 2011 Report Share Posted March 23, 2011 Oh dear, sorry about your bad news, Victoria. I hope the biopsies won't bear out the doctor's suspicions & will fully take care of the issues. You don't need anything else.I just wanted to share a brand new article about MCAD. It lends so much legitimacy to the disorder & pray it will be helpful to you:http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdfAll the best-Julie Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 24, 2011 Report Share Posted March 24, 2011 Victoria- Sorry to hear the down-side news that you got today but glad the doc was aware of MCAD and is willing to work with you. Hopefully the biopsies come back with good news.Julie- Thanks for the article! Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 24, 2011 Author Report Share Posted March 24, 2011 Thanks to both of you.Julie -- about the PDF, can you define what they mean by . . . . mast cell mediator release syndrome? I'm assuming this means a history with some type of definitive trigger such as a bacterial or viral infection? Something that directly preceded the illness, yet set the mast cells into action?What, specifically, would one expect to see at endoscopy/gastroscopy and colonoscopy and the other tests mentioned? Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 25, 2011 Report Share Posted March 25, 2011 Hi Victoria-Which PDF? Mast Cell Mediator Release Syndrome may be another phrase for MCAD, but to be sure I'd like to know which PDF you are referring to.Very astute of you to question what an endoscopy/colonoscopy would show- as mast cells are very prevalent there. Unfortunately, from what I can gather, there is a very meticulous method of staining for mast cells during those tests & if a GI isn't specifically looking for them- nothing will be found. A mast cell specialist would know how to do this and /or could pass along instructions to a GI who was trying to find mast cells. Frustrating!Julie Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 26, 2011 Author Report Share Posted March 26, 2011 Julie,The PDF is: The Mast cell activation disease: A concise practical guide for diagnostic workup and therapeutic options.I have Barrett's Esophagus, so I have another endoscopy/colonoscopy scheduled in April. I'll see if I can't get my GI doc to look at mast cells. Can't blame a gal for trying!Thanks so much. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 26, 2011 Report Share Posted March 26, 2011 Hi Victoria-I thought thats the one you meant. You are talking about the second major criteria for the DX of MCAD. It is written pretty amibiguously. I'm not quite sure HOW one could tell if the specific symptom was due to mast cell mediator release, maybe that's why the authors refer to a unique constellation of symptoms. for instance, I have a history of GERD, IBS-D & IBS-C, interstitial cystitis, chronic sinusitis, conjunctivitis, non-IgE mediated allergy & asthma symptoms, anaphylactoid attacks, autonomic symptoms, etc. The constellation of my symptoms clearly points to MCAD, where as each individually could be innocuous. It is a VERY good idea & a unique opportunity (as these tests are already scheduled) to have your GI look for mast cells. Either consider posting on the Mastopedia forum or search their archives for the proper staining procedure for finding mast cells in the GI tract. It CAN be done by any good GI, but folks rarely have luck unless they are at a major teaching hospital and the docs are specifically looking for them. Wish I had better news, but you are right. There is no reason NOT to try. All the Best-Julie Quote Link to comment Share on other sites More sharing options...
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