Hi Sylvie,
Thanks for your suggestions. Just a correction before anything else: we’re looking into amyloidosis not sarcoidosis, but yet it would be more serious, though MCAS can cause havoc too.
Regarding the testing, it’s not so much that one needs to take care with the samples, here the urine sample, but that often there aren’t enough mediators released when you take the sample. It is a very poor test for the condition, but all that we have for now. Testing is always useful, but it depends how effective it is, and here it’s really not. They are working on improving it but barely. This is why they often just begin to treat with stabilizers even if the test is negative, namely, because so often it is negative and unhelpful in diagnosis. Anyway, I’m not sure it would change anything in how I’m treating myself. But I may have it done after I speak to the specialist next week.
Regarding the difference between MCAS and mastocytosis, yes, there is that difference. But they often do a lumbar puncture to rule out the latter. That’s the norm is testing here and in many other places in the US. Dr. Afrin, for example, would often do so, since they would need to rule it out. But, of course, one can refuse that test.
I’ll let you know how my appointment goes. I’m inclined to agree that MCAS is descriptive of what’s going on with me, and I thank you for bringing it to my attention when you did. Whether I have the testing done or not (those high prices are more than I can afford right now), I won’t rule it out and will likely continue my diet and try quercetin, which in studies has been shown to be most effective in stabilizing mast cells, more so than any pharma option. If I see results, which I seem to have seen so far, then it may signal that it is MCAS, at least one possible problem, since there can be multiple ones, and that the quercetin is working. It may be worth it for you to look into the article I posted and check out the studies on quercetin. Thorne has a great one, and it’s precisely for allergies that it would prove useful, since among other things it’s a histamine blocker.
I’ll write more at some point. Good luck on your end, and thanks again for your concern and for bringing MCAS to my attention.
Quote:
Originally Posted by SylvieM
Hi David,
First of all, thank you for the information and support.
I'd just like to encourage you to get tested for MCAS....For, from all your posts it seems like this might be an apt diagnosis and also one that is not as scary as some of the other disorders you've considered (like sarcoidosis ). I know the testing can be iffy, requiring the refrigeration of urine, etc., but if you and I know this, they might too! Also, there is a big difference between MCAS (deregulated mast cells...normal counts) and mastocytosis (too many mast cells) ...I'm noting the difference for our readers. The first is a managable illness, the other is far more serious. It is the latter that requires a lumbar picture (to my knowledge) and I also think you would be much sicker if you had it (ie have frequent bouts of anaphylaxis, etc.)
So, I suggest you do the MCAS testing for peace of mind and next steps. This is why I'd like to do it too. In addition, mast cells release cytokines as well as histamines....and these buggers, if unregulated, can cause inflammation....might explain your gut issues, as well as my depression and "sickness bevavior:"... my great fatigue. Not to mention MCAS often accompanies/causes PN and dysautonomia. (Caveat: I'm not well versed o
in all of this --I was in the social sciences! , so I'm open to correction!). However, when I first started reading about MCAS recently, I immediately thought of you, David!
I think it's worth the money to find out if this is what underlies your symptoms --- CC will cost far more.
As for the supplements, thanks for the info, but I'm hesitant to take anything with more than one ingredient.....my allergies are active.
Pinkynose...thank you for the thumbs up....I've taken to carting around my test results!
I'm so grateful for everyone's comments and observations.....it means a lot to me....
Sylvie
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