Questions For Mcad Folks

[bjbens]

I'd like to hear from people who have been diagnosed with MCAD. What were the symptoms that caused you to follow that diagnostic route? What type of doctor diagnosed you? Is MCAD more common in people with dysautonomia? Can you distinguish between a dysautonomia flare-up and a MCAD flare-up?

I have a doctor's appt. next week and am really vacillating on whether or not to even bring this up with her.

[Christy_D]

I put off having my son checked for over a year because he didn't have some of the symptoms that I thought were a must. He didn't get rash/hives, or flush. But he would get itchy and had dermographism(sp?). He was diagnosed in April '12 by a hematologist who specializes in MCAS (Dr Afrin in SC). His main symptom is nausea, so I can't tell you if it was the POTS or the MCAS causing it. Most doctors are not that familiar with MCAS, and the testing has to be done in a precise manner. It was the mast cell doctor who prescribed the medication that is finally making a huge dent in my son's nausea, so I'm glad we pursued it.

[bjbens]

Thanks for the info, CHRISTYD. I'm glad your son got such good relief for his nausea with the MCAS treatment. I live in MN and have not discovered anyone here who even tests for this. Guess I'll keep looking.

[Chaos]

There is a website www.tmsforacure.org which is the mastocytosis society website. They address a little bit about MCAD, although when I go there now I don't see quite as much about it as they used to have. When I decided to pursue diagnosis, the site had a list of about 28 symptoms that could be associated with MCAD and I had 23 of them. Most of them were pretty "generic" though so my local doctors weren't too interested in pursuing trying to diagnose it. I did get one elevated serum histamine level but that was about all.

My POTS specialist was the one who finally decided to just treat it symptomatically when I didn't respond to his normal POTS treatments and the docs I'm seeing now for immune dysfunction also treat it as well. So they are both on board with similar treatment ideas, although they all admit that they are not having much luck getting actual test results that indicate MCAD on any of their patients. From reading Dr. Afrin's latest paper, it sounds like they don't know exactly what tests are most accurate to run to test for this at this point, so you may not have luck finding anyone in general practice who does when the top researchers are still struggling with it.

If you are in MInn, not sure if Mayo is an option for you, but I see Dr. Goodman at Mayo AZ. He has been working with an allergist who came down from Mayo Rochester and has a particular interest in MCAD. Maybe there are others still there who were working with him? Just a thought. Otherwise, it seems like a lot of folks are traveling to see the guru....Dr. Afrin.

[bjbens]

Thanks, Chaos, I'll check out that website. I wish I could travel to see Dr. afrin, but that's out of the question at this point.

[Christy_D]

Here is also a good link:

http://www.mastocytosis.ca/signs.htm

And this link has been posted before, it is a lecture with slides that Dr Afrin gave. Very informative.

http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf

[Lethargic Smiles]

I'm so interested in this and have the same questions as bjbens. I'm working my way through the slideshow.

I'm very interested in what type of doctor diagnosed people and how other doctors (PCP) have responded to the diagnosis. Are the tests in the realm of what an open minded PCP could perform?

I think I've got treatment for many of the symptoms EDS and POTS causes nailed down, but I feel like something about my mono triggered something in my body that has been rampant ever since, causing the EDS and POTS to flare up. I don't know if MCAS fits this or not. I saw swollen lymph nodes and fever on the list of symptoms which was my first symptoms (blamed on mono but never tested positive for it), and remains most major symptoms that can never be explained by any doctor.

[Christy_D]

Dr Afrin thinks my sons MCAS was caused from an abcessed tooth that made all of his lymph nodes swell. He cant prove it, it is his best guess as to the cause.

Also. Dr Afrin is very willing to instruct doctors on how to do the testing properly. We chose to have my son tested by him personally to make sure we got it done correctly. We are 13 hour drive but found it well worth it. We now have a local hematologist who handles my son through instruction by Dr Afrin. We still see Dr Afrin twice a year.