Mast Cell Disorders Forum - For Those Monitoring My Saga

Futurehope

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Posts: 357
Clermont, Florida

For Those Monitoring My Saga - I Most Likely Have MCAS
05/28/12 at 12:18:37

I cannot believe this. I wrote an email to Dr. Afrin, today, Memorial Day, and he answered me.

I was basically asking how long a routine follow-up visit would be and whether additional testing would be necessary at MUSC, because I have to determine a return flight. He answered me today! Unreal!

His answer: I have multiple positive markers so no further testing is necessary. I am taking that to mean that Dr. Afrin has enough information on me right now to have me figured out. This is great news.

How many other people get into euphoria because a doctor has figured them out? I feel nutty for being so happy about this. But that's how I see this. It's been 58 out of the 60 years of my life, and someone has finally figured me out. Unreal. I no longer have to hear people telling me that nothing is wrong, that I am a hypochondriac, etc.

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iamnotalone Mentor Offline I Love YaBB 2! Posts: 296	Re: For Those Monitoring My Saga - I Most Likely Have MCAS Reply #1 - 05/28/12 at 13:45:39 Hope; May I be just as Nutty then, and be the first to congratulate you?! With all you're going thru, how wonderful (yes, as crazy as that sounds) for you to get some answers and validation ! What a good doctor too, to contact you on a holiday ! See, you aren't alone lori
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Futurehope

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Posts: 357
Clermont, Florida

Re: For Those Monitoring My Saga - I Most Likely Have MCAS
Reply #2 - 05/28/12 at 14:10:49

I can honestly thank the truly caring and wonderful people on this forum who take the time to share whatever information they have about mast cell disorders.

If it weren't for you all on this forum, I would still be in the dark about my various issues. It is very generous and supportive for posters on this forum to help others, people who they do not know.

I only wish that I could help others on their path to better health. I try. That's the least I can do.

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Futurehope Mentor Offline Posts: 357 Clermont, Florida	Re: For Those Monitoring My Saga - I Most Likely Have MCAS Reply #3 - 05/28/12 at 14:14:05 What do the words under our official forum names mean(under Futurehope)? Mine says "tutor" yours says "guiding light"?!
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Joan

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Colorado

Re: For Those Monitoring My Saga - I Most Likely Have MCAS
Reply #4 - 05/28/12 at 17:30:05

First of all, yeaaaaaa! Of course it's wonderful to have validation for what you know has been going on for a very long time without a name! Dr. Afrin sounds as though he's very dedicated to patients.

Give yourself some credit for persisting and trusting your belief about your health. It's so easy for people to be beaten down by doctors who don't believe them, but you marched forward and are getting answers! Good for you!

The designations under people's names usually have to do with the number of posts they've made on the forum.

Your experience is invaluable to new members who are undiagnosed and feeling confused and sick. Your story gives people "Future Hope!"

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Joan

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Futurehope Mentor Offline Posts: 357 Clermont, Florida	Re: For Those Monitoring My Saga - I Most Likely Have MCAS Reply #5 - 05/28/12 at 17:56:41 While we are at it, what does this signify? It is on the left under my user name. "I Love YaBB 2!"
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iamnotalone Mentor Offline I Love YaBB 2! Posts: 296	Re: For Those Monitoring My Saga - I Most Likely Have MCAS Reply #6 - 05/28/12 at 18:04:45 Hope; My tech-challenged guess is sponsor of this forum? Deb can tell ya for sure. N why are we up so late ? LOL Sweet dreams, lori
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DeborahW, Founder

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Posts: 1224
USA

Re: For Those Monitoring My Saga - I Most Likely Have MCAS
Reply #7 - 05/29/12 at 02:17:55

Your label, such as tutor, does signify the number of posts you have made on the forum. Why words associated with tutor and learning? That is my own sense of humor because I own a tutoring service! LOL

As for the STUPID "I love yabb": if I could figure out how to remove it, I would! This forum that I built is from yabb. You can't get their label off as far as I can tell. Yuck.

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Feel well!
DeborahW, founder

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Julie M.

Guiding Light

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I Love YaBB 2!
Posts: 104
DC Metro area

Re: For Those Monitoring My Saga - I Most Likely Have MCAS
Reply #8 - 05/29/12 at 03:26:15

Hi Hope,

Good news! Dr. Afrin is great and it sounds like you are on your way to an "official" diagnosis.

Trust me when I say that this group completely understands "euphoria" about getting a diagnosis. People who haven't walked in our shoes, wouldn't understand...we get it!!!

Here's hoping that your on your way to better days with your health!

Julie

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: For Those Monitoring My Saga - I Most Likely Have MCAS Reply #9 - 05/29/12 at 15:19:45 I got rid of "I love YABB," and I think I deleted it under "Options" in my Profile. But, I can't remember for sure! LOL.
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Futurehope Mentor Offline Posts: 357 Clermont, Florida	Re: For Those Monitoring My Saga - I Most Likely Have MCAS Reply #10 - 05/30/12 at 01:10:06 Joan, you are correct. I just deleted the "I love yabb 2" in my Profile under "options".
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