What kind of doc diagnosed your MCAS?

[rel8ted]

I have a new dx of hEDS and dysautonomia (they want a full autonomic work up before deciding which kind). I have been having flushing and weird reactions for as long as I can remember, but the last several years, I am also getting crushing headaches, GI symptoms and a blistering rash with the flushing. Sometimes I know what caused the reaction, other times no idea.

Triggers are usually heat, sunlight, strange smell, new carpet. All the usual suspects. I was told to be seen as soon as I break out, which of course, was over the weekend. Saw a primary who thinks I need a biopsy from dermatology. There is no way that I believe they have an idea what MCAS is or will understand that it is almost impossible to get me numb and the odds of them cutting a hunk of skin out of my not numb chest or neck is exactly zero.

So, what kind of doc is actually qualified to diagnose and treat MCAS. Seeing Dr K is not an option bc I am quite certain I can not fly, especially coast to coast. I can barely travel by car these days.

My primary and my new neuro who is sending me to the autonomic lab are on board with the POTS/hEDS/MCAS trifecta, but I need to know what type of doc to look for so I know where to ask to be sent

@Gingergrrl tagging you bc you know a lot about this stuff.

 

[Malea]

Maybe, if you’re on Facebook, you could ask for a diagnosing doctor in your area in one of the mast cell groups. („Mast Cell Activation Disorder“, „Mast Attack“,....)

Here in Germany the closest doctors for that sector would be an internist, allergist, immunologist... but yeah, reality is different

 

[Gingergrrl]

@Gingergrrl tagging you bc you know a lot about this stuff.

So, what kind of doc is actually qualified to diagnose and treat MCAS.

@rel8ted My MCAS specialist is an allergist/immunologist who (for reasons unknown!) took a particular interest in mast cell disorders as his specialty. However, if someone suspected having mastocytosis vs. MCAS, I think it would probably be an oncologist/hematologist vs. an allergist/immunologist.

Maybe, if you’re on Facebook, you could ask for a diagnosing doctor in your area in one of the mast cell groups. („Mast Cell Activation Disorder“, „Mast Attack“,....)

I completely agree with @Malea and I joined two private FB groups in 2015 (actually my ex-husband joined while I was in the hospital with anaphylaxis b/c we did not know where to turn) and he was referred to my MCAS specialist by members of the group (based on where we lived). It took two months to get an appt (which actually is not bad) and he has been my doctor ever since. He is retiring this year and not taking new patients (but he would be too far away for you anyway). But I would ask in "Mast Attack" and the other masto boards/groups for referrals.

 

[rel8ted]

thank you!

 

[wigglethemouse]

@rel8ted I wrote up the MCAS test orders here that can be drawn/taken and sent by Quest (I didn't have Quest codes for some so listed labcorp for those). With the codes any doctor can order. The urine must be chilled before putting in the container and then in the fridge. Blood needs to be separated and frozen immediately by Quest. You need to tell them this. Be off PPI's for 4 days if you take them and can come off otherwise Chromogranin A may be high.
https://forums.phoenixrising.me/thr...hink-mcas-eds-3-gerd-sibo.62187/#post-1011907

The most likely tests to be positive are Prostaglandins and Chromgranin A. Tryptase is almost never positive.

If you have a particular area of skin that is reactive that would be a good place to do a very small skin biopsy to look for increased numbers of mast cells. Or if you have had a previous biopsy (e.g. colonoscopy) they can be analyzed retrospectively. Biopsies are stained for Tryptase, CD117, & CD25 as shown on page 3 of this presentation
http://handouts.uscap.org/2016_cm16_lamhi_1.pdf

I also suggest you read "Never bet against Occam" by guru Afrin. Watch the IMEC13 talk on Mast Cells.

https://twitter.com/i/web/status/1096490873334964224

Hope that helps and good luck!

 

[Gingergrrl]

The most likely tests to be positive are Prostaglandins and Chromgranin A. Tryptase is almost never positive.

I agree and I had positive tests (prior to treatment) for Histamine, Prostaglandins, and Chromogranin A but have never once had a positive test for Tryptase.

 

[rel8ted]

@rel8ted I wrote up the MCAS test orders here that can be drawn/taken and sent by Quest (I didn't have Quest codes for some so listed labcorp for those). With the codes any doctor can order. The urine must be chilled before putting in the container and then in the fridge. Blood needs to be separated and frozen immediately by Quest. You need to tell them this. Be off PPI's for 4 days if you take them and can come off otherwise Chromogranin A may be high.
https://forums.phoenixrising.me/thr...hink-mcas-eds-3-gerd-sibo.62187/#post-1011907

The most likely tests to be positive are Prostaglandins and Chromgranin A. Tryptase is almost never positive.

If you have a particular area of skin that is reactive that would be a good place to do a very small skin biopsy to look for increased numbers of mast cells. Or if you have had a previous biopsy (e.g. colonoscopy) they can be analyzed retrospectively. Biopsies are stained for Tryptase, CD117, & CD25 as shown on page 3 of this presentation
http://handouts.uscap.org/2016_cm16_lamhi_1.pdf

I also suggest you read "Never bet against Occam" by guru Afrin. Watch the IMEC13 talk on Mast Cells.

https://twitter.com/i/web/status/1096490873334964224

Hope that helps and good luck!

Thank you. I think I vaguely remember seeing that a while back , but it didn't fully sink in bc I wasn't "needing" it at the time.

 

[Lord Randal]

I found this thread very useful, thank you for discussing it. I am going to see an Immunologist as soon as I can and know more about this condition.

 

[junkcrap50]

So, what kind of doc is actually qualified to diagnose and treat MCAS

In the US, a hematologist is likely to be helpful. Dr. Afrin, who discovered and literally wrote the book MCAS, is himself a hematologist. MCAS is a version of / has similarities to mastocytosis, which is a hematologic disorder. Also, some of the drugs to treat MCAS, after anti-histamine and mast cell stabilizer drugs fail, are powerful cancer drugs a hematologist would have familiarity with.

I wrote up the MCAS test orders here that can be drawn/taken and sent by Quest (I didn't have Quest codes for some so listed labcorp for those). With the codes any doctor can order. The urine must be chilled before putting in the container and then in the fridge. Blood needs to be separated and frozen immediately by Quest. You need to tell them this. Be off PPI's for 4 days if you take them and can come off otherwise Chromogranin A may be high.

I was told by my MCAS doctor that the lab must have a refrigerated centrifuge, in order to perform the tests. Do Quest & LabCorp use such a centrifuge?

I also suggest you read "Never bet against Occam" by guru Afrin.

I found his chapter on MCAS in the text book Mast Cells to be better: https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf But his book is good too.

 

[wigglethemouse]

I was told by my MCAS doctor that the lab must have a refrigerated centrifuge, in order to perform the tests. Do Quest & LabCorp use such a centrifuge?

I've not seen such a thing. You are correct, that's the biggest issue - quick processing and freezing, and chilling of samples. Not many places do this properly.. Chilling correctly also applies to urine you collect from home that should be chilled before placing in storage container that is also kept chilled.

 

[rel8ted]

I've not seen such a thing. You are correct, that's the biggest issue - quick processing and freezing, and chilling of samples. Not many places do this properly.. Chilling correctly also applies to urine you collect from home that should be chilled before placing in storage container that is also kept chilled.

My MCAS doc specifically gave the hospital lab instructions for this. They have proven their inability to follow directions 3 times and we have given up trying again.

 

[Aerose91]

Lyme literate doc