Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Thanks everyone! Got MCAS diagnosis from 2 different regional docs!! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1331013340 Message started by Doozlygirl on 03/05/12 at 17:55:40

Title: Thanks everyone! Got MCAS diagnosis from 2 different regional docs!!
Post by Doozlygirl on 03/05/12 at 17:55:40

Hello all,
I wanted to thank you for sharing your stories, providing guidance and support, and validating what I knew all along - something in my body was shifting my metabolism. Last week was a big week for me, and I wanted to share what had happended.

My neurologist shared that my previous dermatolgy consult should have picked up mast cell activation. As I tried to talk to him about a consult with an expert, he said he has a guy in town who should be able to help me. I looked him up and saw he trained years ago at NIH. O boy, I thought. This is going to be a waste of my time! This allergist reviewed my records, and called me before I could even set up an appointment. He told me I didn't have mastocytosis with a tryptase of 2.5, and then I politely unleashed some key points about mast cell activation (which I first learned about from DINET then got more details from this forum). By the time I was done, he was Googling Akin's articles, and boldly told me he knows Drs Metcaffe and Akin and that since they wrote the papers, I should be seen by an expert. He told me I obviously knew this research far better then he did, and he couldn't help me. I asked if he could write back to my neurologist and tell him so, and he did.

Meanwhile, I saw my dermatolgy team for follow up since my skin biospy. Even though I suspected this was going to be a waste of my time, I was hopeful since the dermatolgoy fellow was so gracious with his time. The last time I spoke with him, I had shared what I knew about MCAS, and even though he was not familiar with MCAS, he thought it could explain what he was seeing in me. To my surprise, the Attending Dermatolgist (who only gave me five minutes of her time the last appointment), had come in and spent nearly an hour with me. The fellow shared she had written her doctoral thesis on mast cells and histamine on urticaria and other disorders. Before I knew it, she was giving me tips on eliminating yellow and red dyes from my meds and food, and offering to serve as my local physician and order and prescribe whatever one of these experts believes would be helpful for me. I left there walking on air!! For the first time in years, I didn't have to beg, borrow, steal or persuade a doctor for anything. Doors are opening on their own!

On the way home, there was a huge snowstorm we were trying to avoid, and didn't stop to eat. No problem, I always carry supplies. i have tolerated V8 juice and it is a mainstay for raising my salt levels while on the road. So I never considered the histamine reaction potential. Well, I reacted within a half hour with a chest full of congestion and a head full of snot and have been battling a sinus infection, migraine, orthostatic issues, flushing tachycardia flare since then. Switched to allegra at night (from zyrtec), and added nasalcrom which seemed to help me today. Using holistic techniques for the sinus stuff (sinus flushes, eucalyptus, steam, saline spray, oil letting) and have turned a corner.

Working on getting my physician refferal and insurance approvals for my appointment. I even lined up the help of my local pharmacist who will help me sort through pharmacy stuff.

Thank you so much to everyone on this site, because without your posts, I would not have known where to turn. I have more in store, and will post as soon as some of it pans out. The big lesson for me is just when i was about to write off several docs, and cancel the appointments, they ended up surprising me and getting me to the next level!

((huggs))
Lyn

Title: Re: Thanks everyone! Got MCAS diagnosis from 2 different regional docs!!
Post by Joan on 03/05/12 at 19:58:02

Hi Lyn,

You've made a lot of progress! Yeaaa! So glad you've found a doctor who will help. It only takes one, and it lifts a burden off, doesn't it?!

Keep us posted on your progress.

Title: Re: Thanks everyone! Got MCAS diagnosis from 2 different regional docs!!
Post by Mousse on 03/06/12 at 00:20:52

It's so good to hear you are making progress. some of the biggest hurdles with this are finding receptive, good local Drs. My heart is happy for you! Cindy :)

Title: Re: Thanks everyone! Got MCAS diagnosis from 2 different regional docs!!
Post by DeborahW, Founder on 03/06/12 at 01:24:15

So glad that you found those local docs! Congrats!

Title: Re: Thanks everyone! Got MCAS diagnosis from 2 different regional docs!!
Post by Anaphylaxing on 03/06/12 at 18:45:29

So happy for you Lyn, I hope it's a quick road to health for you, you deserve it.

Title: Re: Thanks everyone! Got MCAS diagnosis from 2 different regional docs!!
Post by mommy2seanp on 03/16/12 at 18:10:15

Thank you for sharing. Your story gives me hope!

Title: Re: Thanks everyone! Got MCAS diagnosis from 2 different regional docs!!
Post by Doozlygirl on 03/19/12 at 15:09:44

Still waiting for the referrals (MD and insurance) and review of my records. Hurry up and wait continues. :)