Appt with mast cell expert tomorrow

[vision blue]

Have a tele visit with mast cell person tomorrow. She's an allergist/immunologist and is knowledgeble in mast cell stuff. She's also a great listener and spends lots of time. I think she gets flack from the bosses about spending too much time with each patient.

No matter how many lists i have ready, i always forget to ask important stuff. i have a whole bunch of stuff to get through tomorrow but if anyone thinks there's burning issues to ask generally, please share.

last time i wasted my visit with her discussing vaccines. she thought as long as one had mast cell stabalizers etc in place before vax, her patients were doing fine. But there's no mast cell stuff that i can fully take plus i have alot more than mcas. although she knows i have dysautonomia, and many mast cell patients do, i have not discussed cfs and related with her

 

[hapl808]

With appointments like that, I try to focus on things that are either prescription (like cromolyn) or in their area of expertise (H1, H2, specific MCAS supplements like quercetin, etc). I think we can get sidetracked with general questions which can be interesting, but aren't actionable. With each question, think realistically what you're hoping to get out of it.

 

[Judee]

I don't know if any of this would help and maybe it would be overload (I hope not) but this was something I pm'd to someone recently of some resources I've found on MCAS:

This is a good thread on MCAS. The video is long but very good: https://forums.phoenixrising.me/thr...and-allergy-mast-cell-101.85724/#post-2369589

That doctor also has a book on it: https://www.amazon.com/Never-Bet-Ag...20302&sr=8-1&keywords=never+bet+against+occam

And I just found this website that may be helpful to you in your research. ??

https://mastcellsunited.com/

 

[vision blue]

@hapl808 thanks much. Ive def gotten more concrete over the years as to what i hope to get from the MDs. And i do have a hard time keeping myself from wanting discussion of esoteric consideration of the finer points of our illness. ...i have a balance orepared for tomorrow- i asking for scripts i want to try def on list with big stars to get my attention in case i get side tracked

But also cant resist asking stuff thats unabsweable sobwill think of better ways to phrase. She had ordered two allegy i assume ige tests for me for two thibgs i have big alkergix symptoms- and both were negative! Thats so frustrating so want to know how to think
About that finding in context of mcas abd if theres any tips on how to reintroduce those foods.

But your reminder is helpful because i was about to ask it in a very confrontational useless way designed to frustrate both me a d doc. So i had written down “why are those tests negative when i have symptoms...”. Bad bad question now that i think about it. Better question is “can you help me understand what it means when those tests are negative in context of mcas”. Not perfect but much improved

@Judee And thanks much to you too! Will try to watch and read. I know alot about mcas but always like learning more Though insuppose a video on what not to say to doctors is what i really need a course in.

This doc is cery respectful of others which puts me on my best behavior too so i have a bit more slack but really hoping i i get more lut of it this time than a thicker medical file.

 

[Rufous McKinney]

Have a tele visit with mast cell person tomorrow. She's an allergist/immunologist and is knowledgeble in mast cell stuff.

wow, lucky you......ask questions for me.

I think we can get sidetracked with general questions which can be interesting, but aren't actionable. With each question, think realistically what you're hoping to get out of it.

oh yes: great advice.

thats my question: is there actually any treatment and can the treatment be tolerated?

I cannot tolerate the antihistamines so immediately, I cannot take the primary medicine's they propose one takes. (due to sjorgrens, and drying effects and my tongue and throat choking)

 

[vision blue]

@Judee just saw one of the refs you gave is on affrin's book. yeah, i've read it. I gifted a copy to one of my docs a long time ago but he never mentioned it...

@everyone... so the visit. Quick version hopefully
Waited 50 minutes. this was unexpected and i got frustrated. also end up having to eat breakfast while talking to her becasue i could not wait any longer to eat.

i should do a play by play becaue it think some would find it interesting. but i've had a hell of a day and i' trying to wind down

Some highlights:
I waited too long and it set off my dysautonomia - i guess i said that already
She was fine with having me try cromylyn sodium, not fine with crazier suggestion.
Most of my esoteric questions she not suprisingly had no idea- except for one...I think i asked 4 esoteric questions and on the 4th, was expecting another no idea so was floored when she had something interesting to say. I mentioned i had basophilia in the past as part of an allergic reacton - the critical one that changed my life - and that everyone always talks about eisinophils not basophils and did she have any idea what the connection was with mcas. She said maybe you have (someting i've never heard of!): Chronic Autoimmune Uticaria. Said involves basophils. ordered a test "chronic uticaria index". Anyone who suggests things i've never heard of gets points from me, even if wrong. it's likely wrong. but that's ok.

I think it was a worthwhile visit though some of the enthusiasm i've had for her in past wasn't quite there this time. Was sort of by the book, no speculation, no offering of other patient stories or what she's learned off the book from her mcas patients, and gave me a bit of a hard time for not having the urine test to get proof of mcas, though did give her proof of dermatographia at least. And thank heavens we didn't talk about vax and my not having gotten any. She seemed sort of worn out, not much enthusiasm this time.

she recommended patch testing but told her i had it years ago and she was able to pull the record. dissaponting for both of us. too much to post about right now

so overall, more knowldegable than most about MCAS, but possibly only what Big Brother feeds her, listens well, troubleshoots issues like how to get a med

wasn't sup[er intersted in my worsening reaction to chemicals so i stopped trying to explain. Didn't ever ask: so how are you doing? I had faxed in a couple of pics and she just started with those and we got sidetracted

so got 2 things from it out of the 7 was interested in . i'd say if i went in person, i'd so no way was it worth the effort given i get sick from everything . But w/o having to leave home, yeah, i guess so.

so how do i wind down from this? runway sympathetic overload. maybe that should have been question number 8.

or question 9= forgot to ask her something about quercitan

update: i'm still trying to put my finger on what's not sitting quite right. I felt like maybe I was back at square 1 with follow ups on other things that were NOT mcas when its the latter i wanted- so things like uticaria and patch testing andinterest in dermatographia as unrelated to mcas. not sure, still havenjt' quite nailed it. I'm hungry. And dumb at the moment.

 

[hapl808]

I prefer 'going' to doctors with the pandemic since I don't have to leave the house. It's a harder calculation if I know the visit itself will crash me for at least a few weeks, or even worse if there's lab work.

I recently spoke to my doctor about quercetin in the framework of MCAS and they said they usually saw good response from their patients. I've taken it on and off over the years.

 

[vision blue]

Another update: Here’s the kind of thing that was disappointing

I asked if any of her patients report sny benefit from DAO

She abswered “DAO is not stabdard therapy for MCAS”.

I said but do any of them use it abd like it?

No reply.

@hapl808 i k ow about quercitan and take it some times . What i wanted to ask her is if she knows whether quercitan can be absorbed transfermally or submucously. I also generally wanted as a bonus to gauge her reaction to the non big pharma approach since i think shes lacking in that area And fimally wanted to let her know there was at least something that wasnt horrible for me (in contrast to my bad reactiobs to the more conventional options)

Another thing i forgot is to convey how very sick i am. Since we didnt start properly i never got to even have that documented

 

[hapl808]

Another thing i forgot is to convey how very sick i am. Since we didnt start properly i never got to even have that documented

Don't worry about that - they don't care and the more you stress it, the less they'll believe your complaints. That's my cynical (but empirical) view.

Are you talking about DAO enzyme stuff? I've found it's quite helpful for histamine type reactions, but I'm not as sure if it's helpful when I eat a careful low histamine diet. Same as my experience with cromolyn.

 

[Rufous McKinney]

quercetin seems to help me by reducing swelling...tissue swelling...my mouth/pulp/sinus/tongue/palette

I take it more consistently than anything else.....

 

[vision blue]

@hapl808 good point. It can backfire when one does the im so sick routine

Yes. talking about diamine oxidase. Curious because i think i have more of a monoaMine intolerance than a diamine intolerance. So thought maybe would get some discussion going but didnt get past step 1 on that one

@Rufous McKinney i think Q is good stuff too. Do yku know if its capable pf being absorbed in any way other than GI track? Or any value in topical use

And another update: looked up chronic autoimmune uticaria. Bad fit. Disappointed. So not a good answer but superficial name association to basophils.

At least i ll get cromyln sodium. Awfully big dog and pony show on my end just for that tho.

I thinknfor some patients she woukd be excellenteg she called up relevant wenbsites and journal articles- but i ready do that so that pat. no benefit to me.

Oh well. Moving on.

 

[Rufous McKinney]

Do yku know if its capable pf being absorbed in any way other than GI track? Or any value in topical use

I don't know: applying it to the feet, via maybe soaking in some?

 

[Rufous McKinney]

At least i ll get cromyln sodium.

well thats something worth a try presumably?

I got: allergist/immunologist refused to see me and canceled my appointment.

 

[vision blue]

well thats something worth a try presumably?

I got: allergist/immunologist refused to see me and canceled my appointment.

Didn't we talk about that on another thread and I suggested you phone them up and pretend you made a mistake and got the 2 specialties confused?

 

[Rufous McKinney]

Didn't we talk about that on another thread and I suggested you phone them up and pretend you made a mistake and got the 2 specialties confused?

Oh yeah that. Looks like I need to hire you as my Personal Patient Advocate. Please keep track of what I said I 'd do, please. And then remind me....and then followup later.

I need to find somebody more with it than whomever that was, local, who canceled.

(my chinese herbalist told me the guy is likely focused on organ transplants which I found to be a preposterous thought.....no he is likely the small town guy who sees kids with hay fever...)

 

[Judee]

Was she one of the doctors listed on that mastcellunited link I posted? Just wondering because I think it said some of them also do telehealth.

 

[Rufous McKinney]

@vision blue -Discussion today in twitter re: MCAS:

https://twitter.com/i/web/status/1531397586283806721

 

[vision blue]

Was she one of the doctors listed on that mastcellunited link I posted? Just wondering because I think it said some of them also do telehealth.

No, one of my docs recommended her years ago. Have seen here since pre pandemic.(acrually i dont know if shes on your list also- havent checked)

 

[vision blue]

@vision blue -Discussion today in twitter re: MCAS:

https://twitter.com/i/web/status/1531397586283806721

When i first started wondering if i coukd have MCAS i contacted an amazing then already retired allergist/immunologist who did alot of pioneering work at the scripps institute decades ago. I had seen him in the past and he was very helpful.

Anyway i asked him if MCAS was real or just some garbage de jour. he said decinitely real. He was nice e ough to talk to ne even tho he clearly had had a stroke that affected his speech. Not sure why i didnt stay in touch with him.

 

[vision blue]

I prefer 'going' to doctors with the pandemic since I don't have to leave the house..

I know exactly what you mean. I had many fewer setbacks because i didn't have to go in person. So much so that now somehow going in person is many times as hard.

But i might soon be in a panic. I thought i'd go ahead and scehdule a followup televisit with the allergist/mast cell doc for 6 months from now. (shes still a keeper), but when i selected televists, nothing at all came up for days/times. That's the first time that's ever happened. I then went back and clicked on in person visits (thinking in back of head, perhaps she's leaving and that's why she was different this visit) and there were tons of slots (in advance, she fills up quickly). I then tried another doc who i've had televisit with (infectious disease doc, seemed decent then blew me off and did nothing) - and he too has no slots for televisits! So close to panic. It they are phasing this out, i'm going to be stuck. I may have to pay for services where you get docs exclusively online.

(on quercitan- do you swallow a capsule with the powder inside? I can't do pills or capsules. i've poured out the contents and have put it my mouth but so many things bother my esophagus and give reflux as well that i'm hesistant to swallow more than the bits that trickle down. But i like the "mouth feel"; that's frequently not the case. )