Urgent List For Mcas/mcad Testing

[Altruism]

I finally persuaded my PCP that I might have a mast cell issue, however, he has no clue what to test me for, so he asked me to send him a list of what needs to be done. Could you please help me with this? I can't believe he finally said OK, let's test you for all you want!

Thanks in advance! I found this list on a mast cell forum, but it's too complicated:

STEP ONE: baseline tryptase
(GP, allergist)
Normal... go to step three
Abnormal... go to step two

STEP TWO: bone marrow biopsy plus testing for mutations, CBC
(mast cell researcher, hematologist if you absolutely can't travel)
Normal... MMAS (as long as the CBC is normal)
Abnormal... SM

STEP THREE: RAST plus total IgE
(allergist)
Normal... go to step four
Abnormal... IgE allergies (rule out infections/parasites)

STEP FOUR: antibodies to FceRI, anti-IgE
(allergist... preferably one who's also an immunologist)
Normal... go to step five
Abnormal... autoimmune mast cell disorder (rule asthma, lupus in or out)

STEP FIVE: CBC, CMP, CA-125, Chromogranin-A, CRP, ESR
(GP, immunologist)
Normal... go to step six
Abnormal... can suggest a neoplastic or inflammatory disorder (more testing needed)

STEP SIX: C1q, bone marrow biopsy, mediators (tryptase, histamine, prostaglandins) during flares
(GP, hematologist, immunologist... bone marrow biopsy only by a mast cell researcher)
Normal... idiopathic urticaria, anaphylaxis, and/or angioedema
Abnormal... C1q is for hereditary angioedema (HAE), BMB could still suggest MMAS (based on mutations), elevated mediators on at least two occasions needed for MCAS diagnosis

[DoozlyGirl]

Altruism,

After blood and urine labwork to rule out pheochromocytoma, cushings, carcinoid (which are necessary before starting the path down MCAS), and other neuroendocrine causes of whacky catecholamines, I had a tryptase taken during one of my reactions (to rule out systemic mastocytosis), then skin biopsy of an area of deep flushing on my upper chest/lower neck to rule out cutaneous mastocytosis. This then opened the door for considering mast cell activation syndrome. I did not have other tests until seeing a mast cell specialist, as these tests are often performed incorrectly to find postivie results for MCAS. It took two trips out of state to catch my elevated mast cell mediators.

I'm not sure of your list there, as most mast cell docs do not order a BMB unless they highly suspect systemic mastocytosis. A BMB will not likely show MCAS. If you have ever had any GI biopsies, then those can be restained looking for mast cells with a CD 117 and/or CD 25 staining. Many are finding that these biopsy slides are reatained by the local hospital for up to a decade, so this may be a good option.

Best wishes,

Lyn

[issie]

I understand that Dr. Akin will have a conference with any doctors trying to sort out MCAS. He also has come up with a way to test for MCAS without doing the bone biopsy and using tissue taken from an endoscope.

Doctors at Mayo in AZ are looking more into MCAS and POTS. Dr. Goodman is the neuro there and is giving many of us with HyperPOTS symptoms and MCAS symptoms medicine called GastroCrom and also we are to take Allegra or Claritin and Zantac or Pepcid along with it. I have found it to be a big help to me. The immunologist there still would like for us to go and do the 24 hour urine and have a blood draw when we are having such a bad attack - but, most of us are too sick to get to the hospital within an hour to have the test and are not able to pick up the high tryptase levels when it is happening. So, the neuro is just treating us. I think the ones of us he is using this with - he is not sure what to do with and it was sort of ---we've tried everything else, sort of thing. But, for me ---it has helped a whole lot. (I had an ER visit that was very indicative of MCAS, but at the time was not aware of what MCAS was. But, I wasn't tested for it then.)

It's a real hard thing to get a positive on. But, if you can get results with treatment - that is a good sign. Also, there are things that will trigger mast cell degranulation. It can come out of the blue though and you really can't sort what causes it. There has been a lot of discussion on this on the site. Do a search and read about it from old threads. Let me know if I can help answer anything. There are a few that are really knowledgeable on this.

Issie

[corina]

Altruism, I fixed the title of your topic and removed the first sentence in your post!

[Kellysavedbygrace]

If you really want to rule out MCAS it is helpful to travel to a mast cell specialist such as Dr. Akin, Dr. Goodman, Dr. Afrin, Dr. Castelles, etc. Because it is important the lab draws and processing be guided by a mast cell specialist.

Many of the mast cell specimens need to be collected in pre chilled vials/containers and kept at specific temps as the metabolites are very heat-liable often losing their value within a minute or two at room temperature. In addition a majority of these tests need to be sent out so packing and handling of the specimens in transit is delicate.

The reason it is helpful to travel is that the mast cell specialists have labs they work with who are trained in collection and handling. It is difficult to get a local doc to order the right tests and even more difficult to get a local lab to follow these very detailed protocols.

If you can't travel and your doc is willing to consult w an out of town doc, make sure you select a lab who is willing to follow the drawing, handling and shipping protocols.

[Christy_D]

When I first contacted Dr Afrin about my son, he said we could either make an appointment to see him or he would guide our local doctor through the tests. So, perhaps your doctor could get in contact with Dr Afrin. For example, the 24 hour urine sample had to be kept cold the entire time. We even had to transport it to the lab on ice.

Christy

[Altruism]

Thanks a lot, everyone! I'm trying to make sense out of it all now )

[looneymom]

Try this web site http://forums.phoenixrising.me. I was able to look at Dr. Afrins MCAS Primer for Physicians 2012. It gives the test that he acutally runs. Hope this helps. My son is going to see a hemotologist to be checked for MCAS.

[westernmass]

Sorry, I can't offer any help but want to say thank you, this is a fantastic post. I wish we had something step-by-step like this for each of the many possible causes/factors of pots. My GP is great but also inexperienced and this sort of thing would be great to being him.