Upcoming mast cell workup

[Nymph]

Hi everyone,

It's been awhile since I've been here. Hope that you're all doing as well as possible.

Ever since I first learned about POTS, I've suspected Mast Cell. I'm finally going to see someone about it. I feel confident about this doc's expertise since he worked on mast cell research at NIH. If this is indeed at the root of things, then it seems that treating it would not only help my POTS but also my Sjogren's. I have been doing decently well lately but when I flare it has been hard to keep up with my teaching internship. In terms of Sjogren's I've been flaring more often then I have since starting Plaquenil almost four years ago. In terms of POTS I have noticed more symptoms since the spring pollen has started. 

I will start my first year of teaching in August so I want to get these as well under control as possible!

Any advice for my mast cell workup? Should I bring along a written summary of my entire life history?

Thanks in advance.

[Bigskyfam]

I never had allergies to my knowledge since pots came along 2.5 yrs ago... Spring and pollen gets me randomly, lotions, perfume, cleaners get me at times, med allergies now and allergy to eggs. My histamine level was high... And after urine and labs it was determined neg for mast cell... However I carry benedryl and Zyrtec/ Zantac just in case. 

Katybug I believe was a huge help

[Katybug]

I found it to be helpful to read this article thoroughly and have a solid understanding of mcas and how it is diagnosed, when i had to switch immunologist this past year. I was able to give my new doc more thorough information about my case. I have found this to be the most comprehensive article I've read. The figures and tables in this article are very relevant and contain a lot of information.  

I already had an mcas diagnosis but knew I was going to have to "prove the accuracy of this diagnosis" to the new guy.

http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

Edited May 4, 2016 by Katybug

[Nymph]

Thank you, Katie! I will check it out. I honestly don't know whether I have mcas or just really bad allergies or how one even sorts out that difference, or if it even matters! Hopefully this article will clear that up or my doc will just be really good.

[Nymph]

Katie, are there any good forums or other learning sites for mast cell? I've found mastattack and tmsforacure. Any others you would recommend?

[Katybug]

I honestly don't know. Other members have mentioned mast cell forums but I haven't bothered to go looking for them. Sorry.

[Nymph]

Saw the doctor. He struck me as very knowledgeable and did not flinch when I pulled out my health history/symptom list! After going through the history, he says that my mast cell activation (which he is assuming based on my history - he didn't order any labs) is part of my dysautonomia caused by my autoimmunity. I pressed him a bit for more explanation but he's not the explaining type. 

He gave me a sample of a "medical food" called Sentra PM. In many ways similar to the Neurolink I already take but includes choline, which counteracts histamine. I took some last night and slept really well, so maybe it works. My allergies have been crazy this week.

His other recommendation was Mestinon. I guess that the logic behind that is to increase parasympathetic activity to lower inflammation, stop triggering the mast cells, improve both autonomic function and inflammation. I have been reading about it and it also increases salivary and sweating, which would be good for my Sjogren's. Based on this recommendation, I think that his strategy is to slow down the inflammatory cycle through an increase in parasympathetic activity. Sounds about right to me.

Anybody have experience with this drug?