Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> How many of you have systemic mastocytosis? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1391282212 Message started by livewithhope on 02/01/14 at 07:16:52

Title: How many of you have systemic mastocytosis?
Post by livewithhope on 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?

Title: Re: How many of you have systemic mastocytosis?
Post by Aggie48 on 02/02/14 at 09:50:55

I have been diagnosed with Mast Cell Activation Disorder. I also have Hashimoto's Thyroiditis.

Title: Re: How many of you have systemic mastocytosis?
Post by Rocky 9801 on 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.

Title: Re: How many of you have systemic mastocytosis?
Post by livewithhope on 02/04/14 at 13:36:02

Thank you for your reply. How did this all start for you and what are your symptoms?

Title: Re: How many of you have systemic mastocytosis?
Post by Rocky 9801 on 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.

Title: Re: How many of you have systemic mastocytosis?
Post by redbird on 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

Title: Re: How many of you have systemic mastocytosis?
Post by Rocky 9801 on 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.

Title: Re: How many of you have systemic mastocytosis?
Post by frugalmama on 02/15/14 at 13:41:19

I also have SM with UP. The only skin involvement I have is itching, burning and flushing.

Title: Re: How many of you have systemic mastocytosis?
Post by caormiston on 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.