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Update And Questions - Mcad??


targs66
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I haven't posted in ages -- have only had the time/energy to "lurk" and read my daily digest. The good news is that I have had a bit of improvement. The last time I posted, I mentioned that I had started taking low doses of Benedryl for two reasons: 1) I thought it might help me sleep and 2) after reading a bit about mast cell disorders, I thought, well, a bit of Benedryl can't hurt, let's see what happens. The Benedryl in normal doses does what I'd expect - knocks me out, but I awaken feeling wrecked. However - and this is the really weird bit - I started taking tiny doses (I'm hyper sensitive to everythign anyways) to see if it would help me sleep without the "hangover" effect, and realized it was actually really perking me up. I started taking it throughout the day, and have found it to be really very helpful to give me some temporary energy and brain clarity. I have almost stopped taking midodrine, which had some unpleasant side effects anyways. While the Benedryl doesn't raise my blood pressure very much, it just makes me feel better, which is a godsend. (The midodrine is better for raising my perpetually low BP, but there were times that my BP was a respectable 110/78, and I still felt utterly lousy.)

Based on what people here have said about mast cell disorders (big thanks to Julie/Macksmom for all the wonderful information she provides), I tried taking some of the other anti-histamines. So far, I have not had the same effect that I've had with Benedryl. Cetirizine makes me feel a bit woozy but agitated at the same time (not a good combo for either sleep or daytime functioning).

Here's my question - I'm currently visiting family outside Baltimore (I am American but currently live in England). I've gone back to Johns Hopkins today, where I originally received my diagnosis of neurally mediated hypotension (NMH). The doctor I saw today is the head of the international program, and he's great -- he listens carefully and is never dismissive. He was very pleased that the Benedryl seems to really make me feel better, but wasn't certain why. He was not very familiar with mast cell disorders or more specifically MCAD. We finished the appointment with him saying "Let me look into this and see who you can see about this."

Has anyone had any experience with Hopkins doctors who specialize in mast cell disorders? I'd greatly appreciate any info and/or feedback.

many thanks,

Targs66

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Hello,

I wish I could help you on the John Hopkins part but I wanted to mention to you that Benadryl is how I started treating my mast cell issues and it helped me greatly. Since I started taking Singulair 10 mg twice a day, and zyrtec at night 10 mg, that has helped me feel really wonderful. I feel really fortunate these meds are working. I'm slowly trying to increase my meds. The zyrtec made me REALLY woozy at first. It knocked me out. Maybe you could take it at night? That's how I started it. Now I take it in the morning too and surprisingly it doesn't bother me.

Maybe your doc could order the 24 hour urine methyllhistamine on you? And the tryptase....although a normal one does NOT rule mast cell disease out.

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Thanks for the info!

Unfortunately the zyrtec (cetirizine) made me sort of agitated as well as woozy, so I couldn't sleep! But maybe I'll try it again - it sounds like you adjusted to it; maybe I can too.

I haven't heard back from the doc I saw at Hopkins yet. I'll give him a few days and then email him. Thanks for the test suggestions which I can pass on to him.

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Hey Targs-

Glad you are getting some relief. I wish I knew of a great mast cell researcher at Hopkins, but I don't. Not every great teaching hospital has a specialist in every area- as you probably know :rolleyes: . If you can squeeze in a 2.5 hour drive, the closest doc that I would highly recommend is Dr. Lawrence Shultz in Richmond, VA. He taught Dr. Marianna Castells, the mast cell doc that I see at Brigham & Women's. Here is his contact info: http://www.intmed.vcu.edu/home/divisions/rheumatology.html

Please keep us all posted on your progress.

All the best-

Julie

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Hi Targs-

I did a little poking around and came across this guy at Hopkins:Adkinson, N. Franklin Jr, John Hopkins Ashma & Allergy Center, tel:410-550-2051

He was recommended by Dr. Marianna Castell's office. Other than that, I know nothing about him....

Julie

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hi Julie -

Thanks so much for the "poking around!!" I really appreciate it.

I wondered myself whether there would actually be a mast cell doc at Hopkins. I'm a bit worried that my doc will lose interest if he can't send me to another Hopkins doc who really specializes in this area. (My doc is great, and never dismissive, but has got a somewhat short attention span(!)) I'll suggest that he get in touch with Dr. Adkinson.

And if there's no one at Hopkins, I'll happily look elsewhere, so thanks too for your suggestion about Dr. Schultz.

Will keep you all posted.

All the best,

Targs (Shelly)

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Hi :)

Glad the meds are helping u targs and good luck finding a doc.

ust wounder is macd the same as mastosytosis..? I did have a bone draw that came back negative.

But for me my allergy meds have done more good than any other meds, well low dose midodrin is also helpin (was using a ery high for 9 years, did more wrong than rigth i think).

And i have very unstable bloodpresure. Most it climpes wen uprigth. But it i gett somehing in me i dont tolerate it will fall down...

problem is there is no good docs for me here... So in that way, what good is "free" health care? I whent to my cardio this week. Nice man, but ust checked my hart. Yes it still was fine (and not small at all). And my gps have all neen frigthen of me. I am getting a new one soon, and wounders if she will bee the first one whit a wish to learn a llte about pots etc?

Sorry ranting.... I think i have to go to uk or us. ust have to save tons of money first B)And then gett the names on the good one from u in here :D

U know lots more than all the docs i have meet combined... Wich when thinking about it is a litle sad... :blink:

have a wounderfull week.

And best of luck

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hi Casper -

Thanks for your response - I don't know the specifics about the differences between MCAD and mastocytosis, but my understanding is that it is possible to test negative for mastocytosis even if you have another mast cell disorder. Like you, I'm trying to learn all I can! I hope you find a decent doctor, too.

to everyone -

I just found out something new about the Benadryl I'm taking, but I'm going to start a new post because I think it's quite significant.

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Hi

Targs ; the doc that tested me told me that if the bone test didnt show anything, then i didnt have a mast cell problem. But from what i read that seem not to be all that corect.

Macks mom; i live in norway. So the docs dont really have that many people to practise on. Thoug in some small earyes they are very good, like burnunit in the city i live.

But they tend to be very conservative, even more so than the docs other places. And by culture we are not so open etc like the americans and people from he south of europe.

I did not gett my diagnose here in norway. Here they seem to label every one whit cfs/me. And then stick them on a shelf.

So its been very many loonly years for me. trying to understand a crazy body, and mostly getting patronizing or up in the air answears from docs. Lke everything is expleined whit u are stressed. High bloodpressure, low bloodpressure , not feeling heat etc etc etc etc..

I been runining in to a brick wall for so long. Starting allergy mede for sleep changed stuff, didnt do so much for the sleep, but much more for other stuff. Then i read a bout mastosytosis etc, i did fitt into alot of it. Like having weird allergy reactions, when not having allergy. how i can tolerate somthing, and then not at all (been that way since baby).

I did presur then to draw my bone, the doc congratulated me on not having it. Its not that i whant a dangouros illnes. I whant answears and help. And the allergy pills can not be placebo effect, i have tryed so many other pills whit out any affect. And i was only expecting to gett sleep out of this allergy meds.

But whit a high dose it reduse my body pain, takes away my skinproblems, reduses my hyper bladder, i stoped taking meds for flem, fewer bloodpressure falling days, fewer hartrate storms. etc.

In combo whit getting strickter about avoiding sertan foods etc.

i read online, but it often cofuse me more than anything. My understanding of english is getting better. But still its very hard. Before allergy meds impossible, cos of brainmud. :blink:

I feel like a dog running in circels after my own tail. Getting only dizzy from it all B)

And still i hope one day it all whil come clear to me. one day i will gett the help i need. I meet this doc of late, she was ust an intern at the local hospital, but she really tryied here best. if only every doc did as here. :)And if only she was my gp (primary doc) or even better my spesialst :P

Have a good weekend all :)

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Hi casper,

There is a doctor in Germany I believe, named Dr. Molderings, who is an expert in Mast Cell Activation Syndrome - he recently co-authored that paper with Dr. Afrin. I don't know how far it would be for you to go (my geography is pretty bad), but it's one thing to think about anyway. I wonder if you might be able to email him? His email address in on the paper - it's called "Mast Cell Activation Disease: A Concise Guide for diagnostic workup and therapeutic options" and is in the Journal of Hematology and Oncology.

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Hi Sarah

It depends where in germany. It takes a while whit car. But depending on where, maby not to bad whit plane. Norway is up in the norht, i live on the west coast :)

I am going to check out the articel. Tanx for the info :D

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