Am wondering if anyone here has mastocytosis?

Am in the process of being worked up for it at M.D. Anderson.

Am curious about other peoples experiences and how they were diagnosed.

I have bone pain, very high norepinephrine, T cell, B cell, NK cell  deficiencies as well as cytokine abnormalities.  

Have vomiting, nausea, blurred vision, extreme sensitivity to smells, light and sound.  Cognitive problems, fatigue...A long list.

I don't have the GI problems though...The only box I don't 'tick'.  Gladly.

Would be interested in other peoples experiences.

Thank you!

That's a very high tryptase level!  Even for SM.

Do you have other symptoms, or was that the tip off...Huge tip off.

How are you managing now?  

Any bone problems, nausea or vomiting?  GI problems?

How are you doing now?

Thanks, Debbie!  Yes, those are years.

Even with high tryptase, I still feel well most of the time, which I attribute to diet (low histamine), exercise, control of environmental triggers (molds, dust, some chemicals, artificial scents), supplements, and the right combination of meds.  All my other blood work has been normal recently, including histamine; however, I do have some lesions on my bones.

I used to have muscle and connective tissue pain a lot, but when I got on a correct dosage of antihistamines, the pain went away.  Any pain I occasionally have is easily controlled with a normal dose of Tylenol.

The most annoying symptoms are GI.  I don't usually get nausea, but lower GI cramping, etc.  It's not frequent, and extra medicine and probiotics will stop it.  My GI doc recently recommended I use Lomotil if the usual meds don't help.

My worst triggers for symptoms are stress (physical or emotional), heat, certain antibiotics, and certain foods.  I can't use IV Benadryl, but I can take it orally or by injection.

Hope you can find some relief, Kitt!

It went from 2.4 to around 120 in about 20 years.  Levels can bounce up and down, though, and I don't know if it was a steady climb or jumped periodically.  There are people with tryptase around 400 that still feel good on a daily basis and take minimal meds, too.