Hi, folks--

SO glad to have found this forum!

It is actually my partner, Debbie, who is sick, but I'm the one who does all the online research. In about February she started having these attacks of diarrhea & flushing, along with swelling of her lips and gums. Very, very frightening--close to anaphylaxis. At first we were afraid it might be carcinoid, but the tests were negative for that.

Then a doctor friend suggested mastocytosis, and indeed tests showed that Debbie has high tryptase (23) and high chromogranin-a, and low serotonin. She also has the rash, and we have an appt. to see a dermatologist.

We then found out that a friend had been diagnosed with SM years ago and still had some Gastochrom, which she gave us. It helped hugely, along with Zyrtec and Zantac and diagnosing some food allergies--especially soy. Our allergist and his PA have been wonderful. They are working to get the insurance to approve Gastochrom (we're now out of it, and she is getting worse without it).

I know some of you have seen the wonderful masto specialists in Boston, but our insurance won't cover that. I'm wondering if any of the researchers would ever pay to do the special testing, such as the BMB, if the person already has positive signs like the tryptase?

I'm hoping the dermatologist will do a skin biopsy. We need to have the SM documented. We both already have chronic fatigue and fibromyalgia. I'm already on disability, but Debbie's case is pending, and I think an SM diagnosis may help.

This is such a long, long journey (especially after we've already been sick for many years), but it's a relief to at least have a name for it.

Blessings on all of you.

Liz

Hi Liz,

  I just noticed your post.  If you're not too far away, National Jewish Medical Center in Denver tests for and treats mastocytosis and other MC activation disorders.  Dr. Richard Weber would be the one to see.  He's said to be very nice and knowledgeable and can prescribe meds.  Don't know if that would be covered by your insurance, though.