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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Testing for MCAS with MCAS-illiterate doctors http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1392935255 Message started by Bruce Hart on 02/20/14 at 10:27:35

Title: Testing for MCAS with MCAS-illiterate doctors
Post by Bruce Hart on 02/20/14 at 10:27:35

I've been discussing MCAS in the multiple chemical sensitivity(MCS) community and many are eager to get tested. Many will not be able to travel to a top MCAS specialist, so I'm wanting some tips to maximize patients' chances of proper testing with MCAS-illiterate doctors. Do a lot of people get tests done by non-specialists before seeing a MCAS specialist?

Issues I've heard of:

1. Seems some doctors don't know that some samples need to be refrigerated at all times and then frozen and packed with dry ice and sent overnight express.

2. Improper staining of biopsies.

3. I'm guessing some don't know it's best to test during a flare of symptoms for MC mediators to show up in blood and urine samples?

4. Guessing that some also don't know of preparations before sample collections such as, if possible, avoiding NSAIDS for at least 48hrs since it would lower PGD2. General preparation is already listed pretty well on the webpages for the tests at http://www.mayomedicallaboratories.com/. But I don't think they have the guidelines specifically for MCAS.

Title: Re: Testing for MCAS with MCAS-illiterate doctors
Post by DeborahW, Founder on 03/06/14 at 07:57:48

My opinion is that it is a waste of time to have testing done by doctors who don't know mast cell disease. However, if that doctor consults with an expert and gets instructions on what tests (such as blood tests) to do, that might work. Of course, then the question is who analyzes it and understands the results that are found?

Title: Re: Testing for MCAS with MCAS-illiterate doctors
Post by Bruce Hart on 03/13/14 at 11:01:21

Thanks Deborah. I've been thinking the same thing. I was just thinking the tests could at least persuade people with MCS to try anti-histamines, and that they may need to get some MCAS tests done already before many of the specialists would agree to see them.

The MCAS specialists would be familiar with proper testing protocol, better know what conditions to rule out and know better how to treat and advise patients and more. (mentioning for readers new to MCAS)

I wasn't sure if I was understating it when I said "it's best to see an MCAS specialist", but now I think was. I'm going to more strongly recommend specialists now.