This is interesting. Note the case that begins on page 149:

https://www.google.ca/url?sa=t&rct=j...PsZzUA&cad=rja

Very interesting thread and links- thanks. My new neuro was useless and I have an appointment to see my new rheumatologist in a month's time. For myself I have been thinking about neuro Sjogren's, Ehler's Danlos Syndrome (EDS) and Mast Cell Disorders (Mastocytosis) and also wondering about possibly having Amalgam allergy that is causing burning mouth syndrome. I don't think Mast Cell Disorders or PoTS are commonly tested for in Scotland where I live. But I am hoping I'm wrong!

I was getting some relief from Piriton (not sure of possible alternative brand names in US?) but increasingly the relief is wearing off. I'm hesitant about researching PoTS too much until I know whether it is properly tested for or understood by the NHS in Scotland. I just feel I may end up getting more frustrated by doctors not knowing about stuff I've researched than if I let them do the detective work and tell me - if this makes sense?

I'm glad you found it helpful. If you suspect mastocytosis, it may be worth seeing a hematologist, as I hope to soon. My WBC has also been on a downward trend for a while now, so another reason to see one for me.

And it goes without saying that I feel your frustration. The saddest part of it all is perhaps not that they are ignorant where they shouldn't be, but that they are so resistant to learning new things and opening themselves up to well-evidenced alternatives.

Good luck!

I know it has been a bit of time since last post on this thread but I wanted to let you know my daughter has been dx with MCAS. We have been searching for answers for her for the last 6-7 years and have seen all kinds of specialists which came up with nothing. One ER doctor did say she had POTS but that was it. We sought out a geneticists Dr. Maulik Shah who ordered a battery of blood and urine test. He recently dx MCAS and has begun treatment. The latest was a very low dosage of Doxepin. Although this is an anti depressant, it has a anti histamine effect at a lower dose. She only takes 20 mg a day. We have seen great reduction in pain and daily symptoms with this. She most recently started on the quercetin bromelain. To early to tell how it will work.

One thing I will say is that after years of searching MCAS was somethng that was never mentioned before we met Dr. Shah. Once he saw this through her testing, (high tryptase levels and histamine levels) it all made perfect sense. All her symptoms finally fit. I would encourage you to push forward with it. Not alot of doctors are familiar with it but there are some out there.

Thowell,

I'm glad to hear that your daughter was diagnosed. It's a hell of a difficult diagnosis and so important to find relief. Did she also have neuropathy, I'm not clear on that?

Unfortunately the specialist I saw, who does specialize in the condition among other things, didn't do much testing, mostly because he didn't think I had it, so he wasn't particularly useful and I told him so. But to be fair to him, for one I wasn't the typical case. For example, I don't have POTS, and the majority of patients do. I also don't see the improvement that your daughter does on the blockers.

I'll be honest, I didn't pursue it very much. But that's not due to laziness, since I easily pursue avenues that I think will be helpful, but rather because I don't think I have it. Perhaps I'm wrong, but I suspect other things for now and I really can't get the best testing unless I go to the USA or fork out 1-2K out of pocket for the testing, and since it's not high on my list of suspects I likely won't fork out that kind of money at this point.