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How many of you have systemic mastocytosis? (Read 3449 times)
livewithhope
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How many of you have systemic mastocytosis?
02/01/14 at 07:16:52
 
Just wondering how many on here have SM and for those of you who do,  do you have cutaneous symptoms?  If not SM, what is your diagnosis?
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Aggie48
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Re: How many of you have systemic mastocytosis?
Reply #1 - 02/02/14 at 09:50:55
 
I have been diagnosed with Mast Cell Activation Disorder.  I also have Hashimoto's Thyroiditis.
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Rocky 9801
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What the hell happened???!!

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Re: How many of you have systemic mastocytosis?
Reply #2 - 02/04/14 at 05:41:52
 
I am SM without cutaneous symptoms.

If you set this up as a poll it might produce some interesting results.
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Grandpa, which wolf wins the fight....the good one or the bad onel??

The one you feed, son. The one you feed.
 
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livewithhope
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Re: How many of you have systemic mastocytosis?
Reply #3 - 02/04/14 at 13:36:02
 
Thank you for your reply.  How did this all start for you and what are your symptoms?
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Rocky 9801
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What the hell happened???!!

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Re: How many of you have systemic mastocytosis?
Reply #4 - 02/05/14 at 07:01:02
 
Anaphylactic shock was my introduction to the masto world. Sept 2011.  It was a hell of an intro....vascular collapse, kidney shutdown, minor heart damage. And they say "you are lucky."
And I am - Could have easily died.

symptoms: fatigue, dizziness, joint pain, tendonitis.
Masto meds: Zyrtec, Zantac, singulair, Protonix, 325 Aspirin
Heart Meds: Effient, Crestor
Psych Meds: Prozac

This is a screwy disease and just about anything can be a symptom...or not. It is extremely varied and individualistic.
Some of the first advice I got was "listen to your body" and I hated that. I was a soldier on at all costs kinda dude.

Ok - so - my turn - Listen to your body. It can take quite a while to get back to "normal" after a severe reaction.
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Grandpa, which wolf wins the fight....the good one or the bad onel??

The one you feed, son. The one you feed.
 
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redbird
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Re: How many of you have systemic mastocytosis?
Reply #5 - 02/06/14 at 03:20:34
 
Anaphylactic shock ...this has always been one of my "biggest" problems with masto...read your meds etc but I do not see anywhere that you mention that you carry an "epi pen"  which is a must ..I have one by my bed..one in the kitchen and carry one in my purse ..
it can sure help save your life
redbird
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Rocky 9801
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Re: How many of you have systemic mastocytosis?
Reply #6 - 02/06/14 at 05:00:08
 
Thanks for pointing that out Bird!!

Yes - I carry 2 epi pens in my "crash bag". It is a small tactical shoulder bag  that looks "manly" (think law enforcement). Works well for carrying the epi, nitro, anti histamines, steroids and a few other things required for us masto folks.  

My wife carries one, one in tackle box, one in the bedroom.
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Grandpa, which wolf wins the fight....the good one or the bad onel??

The one you feed, son. The one you feed.
 
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frugalmama
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Re: How many of you have systemic mastocytosis?
Reply #7 - 02/15/14 at 13:41:19
 
I also have SM with UP. The only skin involvement I have is itching, burning and flushing.
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caormiston
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Re: How many of you have systemic mastocytosis?
Reply #8 - 04/26/14 at 14:52:10
 
Do I have SM?  My allergist thinks I do - but I have not had a BMB to confirm that.  I started with TMEP probably 35+ years ago (nobody knew what those spots were back then), then food allergies, then syncope with any exercise, then bone pain, spleen pain - now 35 years later, tryptase is 200, skin biopsies positive for D816V mutation (CD117 positive).  It took until 6 years ago to find a doctor to help me.  I'm 71 and taking many medications, and see no reason for a BMB at this stage - I'm swimming, having fun with grandkids, enjoying life as it comes.
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