Quote:
Originally Posted by SylvieM
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
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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.