Hi En Bloc,

Thank you so much for your interest....your posts are always so intelligent, informed and interesting......based on your history, I was wondering if you had been tested for MCAS.

Testing:...tryptase levels (sometimes normal with disorder); histamine, prostaglandins, and leukotrienes in an iced, 24-hour urine sample; sometimes a bone marrow sample.

Antihistamines:
I'm hesitant to try antihistamines because they tend to act antithetically and make me hyper ....yes Benadryl keeps me awake (although they do help my allergy symptoms). I would just like to know if I have MCAS before taking anything. I have so much trouble sleeping anyway (I'm sure you can relate).

Bed:
I am extremely uncomfortable standing and even sitting with my head unsupported. I do have a body worker/yoga teacher coming 3x/wk. She's great. I also push myself outside as much as possible. I never feel "normal." (I was very high-energy and athletic before all this). I thought it was simple fatigue....neuros concurred.

So I had my first tilt table test two weeks ago. My BP dropped from 149/90 to 80/60 before I was vertical. I began passing out and they stopped the test. I had no idea my BP is so labile.....this is why it is so hard to stand/walk. I also have POTS. I can't believe my neurologists were not on to this. (I found my own cardiologist...he thinks the cardio stuff is "severe," and found other heart issues as well.) I had a nuclear stress test last week and I'm waiting for results...I'll be going in Tuesday.

I would be very open to your suggestions and would love to confer....how do we PM on this site?

By the way, I had three panels of testing for autoimmune disease and nothing!

Again, thanks so much!

Sylvie

I have classic neurological based Sjogren's with ganglionopathy. The allergies I have are weird, but not wide spread and I don't get any hives or such. Just weird like being allergic to EVERY antibiotic in all the drug classes. I have also tested positive for allergies then tested negative for the same allergies. But these types of things are quite common with autoimmune disease due to the improper and erratic actions of the immune system. I don't really have any unexplained allergies or symptoms...everything (now) seems to fit in a neat little box. But of course it wasn't always like that and it took many years to understand the 'what & whys' of my condition.

That being said, I'm very interested in the MCAS and plan to discuss it with my rheumy/neuro at Hopkins this spring...after I've had a chance to educate myself a little, and that starts with some of your links and the discussion you (and DavidHC) began in the last few days. So I'm not ruling this out as a possibility or additional aspect of my condition.

As for the NMH (neurally mediated hypotension--from your tilt table) and the POTS. Although these two conditions can come by them self, they are most commonly paired together. Actually, the NMH 'causes' the POTS in many cases from the low BP causing the heart rate to NATURALLY increase during these positional changes. When the brain detects the drop in BP, it automatically increases the heart rate in order to get blood to the brain. It's called a compensatory reaction. So these two conditions go hand in hand.

The complete autonomic testing takes a while but it sounds as if you have a good idea that your autonomic system is failing to perform as it should. Of course, this will leave you unable to stand for any length of time...even sitting up can be difficult. There are many other aspects of dysautonomia...that effect other systems.

I will sit down in the next couple days and write out some of the things I have done to help and medications commonly used to treat dysautonomia. I will also discuss some of the other testing you may need and what to expect from it. I'll PM this info later in the weekend. There is a link in the top right corner of each page that says 'private messages' (just underneath your 'welcome ...user name'). When I PM you, this will become bold and show an unread message...just follow the links to read it. You can reply directly from my message or PM any time by right-clicking on my user name from any place it appears on the forum or thread. The drop down on this right-click action will give an option to PM.

Like I said, I'd rather do it this way than try to discuss two separate topics within the same thread. I don't want to detract from the MCAS topic in any way.

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.

Hi Sylvie,
There is an exercise training program by Dr Leviene from Dallas that might be helpful for POTS.
http://www.sciencedirect.com/science...66070214002021
You can read about it in this blog -
http://potsgrrl.blogspot.co.il/2011/...-protocol.html
There is a lot of information about tests and treatments for POTS in that blog.

According to what you wrote here and on previous posts, if your blood pressure is falling when standing, I am not sure the diagnosis is POTS, as far as I know it seems NMH/OH.

Just a quick note about POTS and NMH/OH: POTS can present by itself. But patients that have NMH/OH almost always have POTS as a secondary Dx...because of the very thing I discussed earlier in this thread. When the BP drops upon standing, the body naturally and automatically increases heart rate (to tachycardic levels) to compensate for the low BP to get blood to the brain quickly. So, they end up with POTS secondary to the NMH/OH...because both conditions are a result of postural/orthostatic changes. I hope this makes sense.

I have both....as noted by En Boc, they are interrelated. I've heard about the Leviene protocol, but have not read anything except patient experiences....thank you for these references!