Mast Cell Disorders Forum

texan1960

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How long?
06/06/11 at 07:00:26

How long do you think you have had these mast cell problems? I have "formally" had issues for just over 10 years. However, I suspect I have had them since I was a kid (had spots all over me that would not go away according to my parents...eventually grew out of them- - will never know, but wonder). Always seemed to have immune system, allergies, sinusitis, bladder problems, etc. even when I was little.

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Mike

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Re: How long?
Reply #1 - 06/06/11 at 07:13:32

When I was an infant, 43 years ago, I was hospitalized, I could not eat anything (allergic to just about every animal milk). My parents were told I most likely had Leukemia. After several months in the hospital, my Drs. told my parents I did not have leukemia. They said I had the worst allergies any of them had ever seen (just 3 years ago when I went to an allergist for the 5th time in my life, he said I reacted to every single allergen he tested for (over 40) and reacted to everything besides sterile water. The first time I shocked was in 1990. Self-diagnosis 2009. Good question!

Mike

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texan1960 Guiding Light Offline I Love YaBB 2! Posts: 178	Re: How long? Reply #2 - 06/06/11 at 07:30:30 Woww...you did go through the ringer as a child! I am curious how people are doing in different phases of having these problems.
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Starflower

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Re: How long?
Reply #3 - 06/06/11 at 07:34:13

My disorder started around puberty. I was definitely reacting to some of the things that I now know are my triggers... hormonal changes, stress, certain medications, etc... I had no idea that I had a mast cell disorder until 2008 when I went into anaphylaxis for the first time. As scary as it was, in some ways it was a gift that my disorder flared up badly enough that I could finally get a diagnosis... and get rid of some long-standing symptoms that I thought were just "normal for me."

Heather

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: How long? Reply #4 - 06/06/11 at 11:11:18 Not till I was 29....
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mikev Guiding Light Offline I Love YaBB 2! Posts: 188 st louis, mo	Re: How long? Reply #5 - 06/06/11 at 14:36:42 mine didn't really become noticable till 6 years ago at age of 59, but i feel mine was brought on by prolonged reaction to supplements i was taking that had chemicals in them that i was mildly allergic to MikeV
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runner

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Re: How long?
Reply #6 - 06/06/11 at 23:29:15

I, too, have had spots all over my body since birth but they have faded away in the last 15 or so years. No itching ...no pain . Till I was 52 then burning and pricking for 5 months till it went away on it's own. Know I have it again ....started on New Year's eve. pretty sure the trigger. Combo ....racing in the cold,hot shower,alcohol,crab legs,virus. Same thing 11 years ago in Jan. 2000 that started it!!. Started accupunture and starting UVB light treatments, today. Funny I have allergy,sinus,and bladder,too. Accu does work for me for sinus .

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texan1960

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Re: How long?
Reply #7 - 06/07/11 at 03:19:36

Yes, your story does sound somewhat like mine. I have only had three spots, the size of eraser heads, appear on me. Each time when I had a bad, prolonged flare. Each time have had them taken off. I guess I am wondering if many have had problems that were brewing under the surface all their lives and then something triggers it to flare out, like an illness, reaction, hormonal changes,etc.

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Riverwn

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Re: How long?
Reply #8 - 06/07/11 at 05:26:24

I've had "spots" all over since I was in my early 20s. (Im 55 now). I was free of any symptoms for years. Worked sometimes 80 hours a week (often). About 6 or 7 years ago, I started having all sorts of symptoms that I thought were merely me growing older--bladder frequency, skin collagen dissappear--overnight, knees and hips and back hurt all the time, I did very badly in the heat, I would sweat horribly in it , gasp for breath and almost collapse till I sat in AC. I started shocking about 3 years ago, but the last 2 years were much worse--I shocked 14 times in under 2 years. Of course thats when I KNEW something big was going on and finally found out I had masto.

I stopped working Sept of last year (they actually pushed me out, I lookes so bad). It was a blessing in disguise, I got SSD in 4 months!

Ive gone from 1 pill a day (3 years ago) to more than 26 a day now--but Im doing good and under control.

THIS forum is a HUGE part of why I am doing so much better. Theyve taught me how-to control my own life and I adore them for it--especially Joan, Debbie, Lisa and Heather. I think I bugged them to death LOL...I am thankful for this forum and ALL of you

love
Ramona

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texan1960

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Re: How long?
Reply #9 - 06/07/11 at 07:13:15

Ramona
i am glad that you are more stable now! I would point out to people who are just beginning their illness or investigation of it that i have had ups and downs but have not gotten any worse over the years either in terms of the MCAD or IC symptoms. It took me a while to get diagnosed. The turning point for me was my initial diagnosis of IC... had a wonderful gyn who stood by me a decade ago...my favorite quote of his was "If you tell me you are in pain, I believe you are in pain. Because we have not found a diagnosis yet, just means I am not smart enough to have found it. But, we will keep working. I may not be brilliant, but I am a hard worker." And indeed, about 10 years ago, when they looked inside my bladder it was mast cell destruction city...the photos are not pretty. Needless to say he is still my gyn for sticking with me through the low points....had another dr. tell me it was all in my head (great encouragement when you are in dire pain...wonderful, my bladder lining is completely destroyed because its all in my head...right, I think its the mast cells...durrr!). I guess we probably all have horror stories like that!

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: How long? Reply #10 - 06/07/11 at 07:19:10 Im just glad you found the right DR to stick with! One good DR makes up for so many that wont admit they dont know and turn it on us.. I admire a DR who says they dont know--theyre human and not computers, I dont expect perfection, I DO expect honesty and compassion Glad you are doing better!! hugs Ramona
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Lisa

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Re: How long?
Reply #11 - 06/07/11 at 10:24:15

There's not a whole lot you can do about doctors like that except to chalk it up being ignorant. Those are usually the low level doctors who seem to feel that they are God's gift to patients. Just say "INCOMPETENTS!" and walk away!!!! It gets gratifying after a while! Cheesy

Now when I run into some of these doctors, I get this smile on my face in satisfaction of how far I've reached and how stuck in the mud they are! If these little doctors only knew how high up in the ranks that I've gone with authorities and researchers, they would hang their heads in embarrassment!!! Embarrassed

Poor little doctors!!!! Grin

Lisa

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Don´t forget, there is so much more to life than being sick!

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