Lyn,
Welcome, and I have been following your story with interest (you are an amazing lady who’s done a great job pinning down possible diagnoses!), because I have POTS and probable MCAS/D and am in the stage of pinning down a diagnosis also.  I too have largely self-diagnosed the MCD, finding info online and bringing the idea up with my docs, who then decided with test results that yes, this might be it... I'm waiting to see what the doctor writes in her report now that the labs are in.  I also plan to contact Afrin or Castells -  I am in Colorado, and we have noone here who is an expert either; I have a good GP and seemingly a good allergist/immunologist (so far), but I don’t think either one will give me an MCAS diagnosis without support of one of the experts because they just don't know enough on this topic.  The only reason I’ve waited to contact the experts myself is concerns about medical insurance covering it, but it is now time for me to contact the insurance company and find out what would be needed.  I also can’t decide whether I should contact Afrin or Castells… I hear good things about both of them!

I noticed you asked a couple questions a few posts back that noone answered.  I’ll tell you what I know/think (realize I'm not a medical doctor) and hopefully others will correct me if I’m wrong!:

1) med for severe menstrual cramping.  Let’s assume you have MCD, and if so, then NSAIDS aren’t good.  But I believe Tylenol might be OK since it’s not an NSAID.

2) re: supplements.  I have been tempted to start on a bunch of supplements too - - I bought quercetin, and pulled out my magnesium, vit D, vit C, multi vit/mineral.  But we are so reactive that even this can screw up our system, as I found out, so everything needs to go slow.  I have not gone back to taking Vit c because the first time it semed I reacted to it (I’ll try again sometime soon), I have not tried the quercetin pure powder yet (both of those are considered mast cell stabilizers), but I have been able to take a multi-vit/mineral from the health food store that contains no artificial dyes (I think many of us are sensitive to artificial food and med colorings), and I take Carlson’s Vit D drops because many of us show very low vit D levels (I see you must too based on the IU you’re taking – another sign you fit MCDs).  Totally anecdotal, but vit D may have helped my hyper-scent sensitivity to partially abate - - I had gone off my D and started being unable to tolerate any smells, then got back on it, and much less sensitive then - - there is some connection between vit D and the olfactory sense in the literature, although that is usually a restoration of smell in those who had lost that sense.  I take magnesium occasionally, as it helps my tachcardia/BP problems as long as I take it in moderation.  I get potassium from bananas, and for now I’m ignoring calcium but probably need to take some eventually.  

3) N Mehtylhistamine and prostaglandin test are 24 hour urine collection not blood tests. My understanding is that you need a lab that understands how to handle the sample, as that can be screwed up, but your allergist/immunologist should be able to find out if the lab is able to do those.  I just got back results showing my n methylhistamine was very high, even though my prostaglandin was normal, and my blood tryptase was considered normal at something like 4 or 5 (I’d have to look it up).  My local doc wasn’t willing to diagnose MCAS based on that, but I think I fit the bill perfectly and expect one of the experts to give me that diagnosis (I’ve had all the other stuff ruled out). And yes, it is best to do all those tests when you are episodic if at all possible. In MCAS as I understand it, tryptase can be normal at baselline, but elevated to max level only at 15-90 minutes after an episode (part of the reason it’s hard to catch - - in mastocytosis my understanding is that it is usually elevated all the time).  The urine-measured mediators will also be elevated more around the time of an episode, but are not so short-lived I believe.

4)  You said you don’t have POTS?   Is that because you don’t have tachycardia consistently on standing?  Because I don’t either, just some of the time, and my BP can be all over the board when I’m orthostatic or supine (drops after eating, gets high in the middle of the night, or whacks between those extremes rapidly sometimes), and I can get tachycardic but also bradycardic at times.  My most common pattern is postural/standing tachycardia and postprandial BP drops, but my understanding is that those of us with the hyperadrenergic type of POTS that tends to go along with the MCAS tend not to fit the classic diagnostic criteria on TTT, etc.  I’m curious why they decided you have another kind of autonomic neuropathy?  I never had a firm diagnosis on hyperadrenergic POTS either - - I was given the labels “hyperadrenergic” and “POTS” separately, so just have made the assumption they go together.  Maybe someday I’ll do the tests.

5)  You said you were on bioidentical progesterone cream - - just an FYI, both bioidentical estrogen pills (compounding pharamacy) and bioidentical progesterone cream made my MCAS/POTS symptoms worse    (I finally started realizing that what I thought were menopausal hot flashes were actually MCAS hot flushes!), and my new doc says it is tricky to treat hormone imbalances without screwing up other things.  Don’t know if that’s a factor for you or others, as we are all different, but just thought I’d note that.

I will be anxious to hear how it goes with Afrin – good luck with that!  So glad I found this place (and the yahoo groups and dinet) too - - aren’t these women (Ana, Lisa, Joan, Julie, others I’m forgetting to mention here) a wonderful form of support and source of info?!

P.S. Go slooooooooooooooooooooowww with any changes - - meds, foods, supplements.  I didn't know that until someone on one of these forums warned me, and now that I've slowed it down (I was in too big a hurry to expand my meds/foods/supplements) and de-stressed some mentally, my recovery has been going better with more stability ... although I still have a long way to go.  I just picked up cromolyn sodium (generic Gastrocom) from the pharmacy today and am trying to screw up enough courage to give it a try! (realizing it will take weeks to help, if it does, but I'm just worried about an anaphylactic reaction).
Carol

Thanks, Ana.  Boy did I have a lot of typos in that post -- brain fog/poor editing.
Yes, tylenol never worked well for me for cramps either (it's never done much for me for any pain), but I figured it was better than nothing if it's tolerable.  I have only taken a small dose of Imitrex for the beginning of a migraine since the MCAS hit, and I did OK with that.
Carol

Have the spots on your hands been biopsied to check for UP?

Hi Melissa,
I wanted to respond to your post, but waited until I got the path report of my skin biospy of my red blotchy chest , which showed  telangiesctasia with sparse superficial perivascular inflammation containing lymphocytes, histiocytes, and rare plasma cells.  They did a Giemsa stain which showed infrequent scattered mast cells, that are the minority of inflammatory cells.  It goes on to say not specific, but could be essential telangiectasia.   There is a very rare single eosinophil in numerous sections, stating it could be acute urticaria, and not likely chronic urticaria.  It goes on to say infrequent mast cells and the pathologist does not believe this is TMEP or UP.    

Clinically, I have been flushing and having these red splotches for 28 years, so when the last lines read should be interpreted with consideration of clinical setting.  My derm appointment is Friday.   Your clinical description seems like mine, so I'll definitely keep this in mind.  Working on getting to a mast cell expert.  
Thanks so much, Lyn      

Lyn,
No problem taking so long to respond - - I haven't been on any of my groups or forums this past couple weeks because I've been trying to get back to work, and with taking care of the kids (and my husband now traveling more for work), I crash when I get home and barely have energy just to do what I have to.  So I'm pretty spotty on responses too, but got notified of this one as I was following the topic.

I don't know exactly what generic cromolyn sodium costs - - I was surprised (albeit glad) to find out that my medical insurance covers it with just a $15 copay.  We are thinking of switching to my husband's insurance if I cut back my work hours (which I may have to since I'm having great trouble with reactions to the building my office is in), and I need to find out if they will still cover it - - my pharmacist says some insurance companies will cover it and some won't.  I believe he said that if I had to pay for this myself, it would be something like $500/6 weeks!  So if I didn't have insurance to cover it and needed it, I'd most likely see if it's affordable to buy direct from the Bellevue, Washington compounding pharmacy -  although I'm in Colorado, someone on here told me that you can get it shipped to you from them for much lower cost (although you still need a prescription).

I haven't been on it yet  -  it's sitting on my kitchen counter and every time I start to think it's the right time to try it, I am having a flare, or too busy the next day to take a chance, or whatever.  I've become so shell-shocked at trying new meds, that I admit I'm afraid of it.  Although I doubt I will have a reaction because I've successfully used NasalCrom (over the counter) as a throat spray 4 times a day, which my first allergist suggested.  Hmmm, come to think of it, since I stopped doing the NasalCrom I've felt worse.  I think I better get started on the generic Gastrocrom this weekend as I'm told it takes 3 to 4 weeks to kick in.

A quick note on POTS - - someone on here can correct me if I'm wrong, but I think the TTT with POTS is a bit like the mediator testing for MCAS... if you're not symptomatic that day it won't show it.  I am like that - - sometimes I get major tachycardia just standing up and sometimes I don't get any tachycardia for months on end (notably, I haven't had it since I've been on the antihistamines for MCAS).  So my thought is that if you do the TTT on a day when you're less symptomatic, that doesn't necessarily mean you don't have POTS. Convincing a doctor of that is another matter, I suppose, and since you'll be treated the same whether it's a generic "dysutonomia" or "POTS", it doesn't really matter.  But my understanding is that there appears to be a higher incidence of MCAS in POTS patients.

Hope you're doing better! I am about the same.  I had a few weeks of relative normality and feeling much better, but the past two days for no reason I can discern, all my worst symptoms are kicking in again!  I was feeling almost confident for awhile that I was beating this thing, but I am rather depressed today that it seems to have flared badly.  The worst thing for me with this disease is the unpredictability.  If I just knew I was going to be BAD, I'd apply for disability and be done with it, and if I just knew it was going to manageable most of the time, I'd not fear going back to work full time and making some other plans.  But it's this one day I'm OK and the next I'm not (without a clear trigger --  although I'm wondering if not enough sleep is a factor as I haven't been getting enough the past week due to circumstances beyond my control including a child with the flu), ACK.  The unpredictability is just a darn hard way to live!

Sorry to complain - - I know I have much to be thankful for... but I know that people on this forum will understand the need to complain sometimes!   Thanks everyone for being here - - this forum has been helpful for support and information.
Carol

Yahooooo Lyn! So happy for you!

Glad you're sorting out some triggers

How are you approaching your diet and are you noticing any triggers?

Are you improving at all?  

Hope so!

Carol

SO glad to hear you are having small improvements! I hope your diet advances soon too!

Ana

Carol,
I know, I was floored at the turnaround time!  I've already had to wait 6 months to see my own autonomic neurologist.  

No worries.  I don't believe any of us whine, we vent! Funny thing, my migraines stopped since starting AH.  And so did my horrible cramping, and heavy monthly bleeding.  Go figure.  Not sure if this will continue, but definitely appreciate the reprieve!  

What the he# is an "anaphylactic like" episode?  Doesn't the 6x elevated methylhistamine define anaphylaxis????? Any idea what elevated your IgE?  Do you have any known allergies?  And yah, your labs do fit the MCAS diagnosis.  Wonder why she didn't stick the landing?  All the hard work is done.  You met the criteria.  No guessing here?!?  

And re: starting up cromolyn, your not chicken, your just smart waiting til your husband returns.  Joan and Lynda have written several posts on slowly starting up the cromolyn.  If you havent seen them, maybe it'll be worth a search. Good luck.  

Thanks for the response, Lyn