Hmmm I honestly don't remember who I saw but I don't think it was a specialist for dysautonomia ... I looked at the CC website and the only name that maybe rings a bell is joshua gordon but I'm not really sure sorry. The doc that is outstanding is the one at OSU though. Can't say I was dissatisfied with CC evaluation - they were 100% willing to do extra tests including the MRIs (which was mostly because I was worried about MS - the doc told me no way its MS but he would sign off on the MRIs if it would make me feel better about it which I think most docs would not do). Maybe if you are having no luck with your current docs then this is the right move. For me I didn't realize how good the doc I already had!

Best of luck to you!

I think Cleveland Clinic is an excellent choice. I hope you don't have to wait long to get in, and that they assign you some attentive doctors that will find appropriate treatments for you.

Did they say they offered testing of MCAS? That would be great to see if this is a factor in your complex conditions.

Thank you! --

I'm glad all your time and money looking elsewhere made your realized there's no place like home!

It is just such a rough journey. It is sort of amazing to me I'm bedridden and can't seem to get help ----my brother in law is very ill with terminal cancer and he is surrounded by such a good team who are doing all sorts of treatment. He's still working, while I can't....

Anyway, I hope it's a good step -- we'll see!

Sylvie

Hi En Bloc!

Yes, they are offering MCAS testing....main reason for visit -- also a valiant attempt to stay out of bed because of fatigue!

S

You're welcome.

My allergic type symptoms seem to have minimized with the introduction, but it's too soon to tell. I've also been breaking my diet now and then, so I can't tell. Now I'm back on it and has more of a baseline. The studies linked to in the article, this one in particular, note that quercetin blocks more than just histamine, which is why it's so promising. Apparently unlike any other mast cell stabilizer, it also blocks the inflammation. Anyway, worth a try, since it has all sorts of other benefits. I hope it works for you. I just skipped the histamine step, keeping to the natural root. I take 500 mg of quercetin with breakfast. With so little work on the supplement and this issue, it's difficult to know dosage and such things. I may up it to up to 3 500 mg doses at some point, but not now.

I'm seeing a specialist in a week's time, got lucky with an early appointment, otherwise it wouldn't have been till August. I don't know if I'm going to run the tests, since they're not particularly the best and so often result in false negatives. My situation/symptoms, etc. are always changing. Plus, I'd have to pay out of pocket, just over $1100. I may just take the quercetin approach and see what happens, because if I do have it, all they will do is try to use a chemical pharma cocktail to stabilize the mast cells. The one thing I think about is whether I have mast cell proliferation, but there I don't want to do a bone marrow biopsy, since it's invasive and has risks.

Well, I hope your testing and quercetin use are useful. Such a journey indeed! Keep me posted and I'll do the same. In the meantime, good luck!

It does have a number of flavinoids to be sure, but it doesn't seem like quercetin is one of them: http://www.ncbi.nlm.nih.gov/pubmed/14733505. But who knows, perhaps these specific flavinoids can also help block mast cell mediators. I haven't looked into them. Histamine is just one of many things released by mast cells. Quercetin is not the only one studied to prove useful for mast cell stabilization, as some Pubmed research will show. Actually, here is the product created by the physician and his team based on their studies: http://algonot.com/product/neuroprotek/. But it's more expensive and has additives that I don't want. But quercetin seems to be the most effective of even these, though much more study would be needed.

not let the new neuro know about the old one without having to repeat all the same tests. A similar thing happened to me because the doctor I had seen had a great reputation and the new doctor didn't want to go against him. It was infuriating and a waste of my time!

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

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.

i went to mt. sinai when i first began my quest for a dx, treatment, etc. the person i saw there had been recommended by the PN Association. after a cursory examination of me he concluded that i did not have PN! wtf? i had undergone 5 chemo treatments about a year before which had been so neurotoxic that i was unable to walk & had to use a wheelchair and this "highly qualified" PN expert reassured me that all my symptoms did not point to PN.

sooo, stay away from mt. sinai...that quack may be still there & he was the chief of the dept! god only knows how many kindred spirits he may have hired.