Hello to all!  My name is Beth and on April 14, 2011, I was diagnosed with Indolent Systemic Mastocytosis.

The spots, urticaria pigmentosa, first arrived somewhere between 5 to 7 years ago.  I knew my body well enough to know that they were an indicator of something, but when I mentioned them to my doctors, they did not seem to recognize the spots or to believe they might require testing.  Finally, in November, 2010, a dermatologist took notice, first scheduling a biopsy, then a 24-hour urine test and extensive blood work.  The dermatologist is in KY, where my husband and I have lived for most of our lives.  We recently purchased a home in FL, and were already in FL when the dermatologist ordered the additional tests.  As a result of those tests, she referred me to a FL hematologist who did a bone marrow biopsy and ordered a CT scan.  It was this FL hematologist who made the diagnosis.  I had never heard of Systemic Mastocytosis, but I finally had an explanation for some of the symptoms I've dealt with over the past years!  Currently I am on no medications for the ISM, but I do carry an Epi-pen.  I understand that with ISM, it is likely that I will have a normal life expectancy, but will need to be attentive to avoiding triggers, managing symptoms and doing whatever I can to stay as healthy as possible.

Heat seems to be the most consistant trigger.  I usually walk about an hour in the morning, shortly after sunrise.  So far, I continue to be able to walk without being bothered by the heat.  When my hematologist began to discuss SM with me, he suggested I might want to find someplace other than FL to be during the summer.  My husband and I, who are both retired, had already decided to sell our KY home and move to FL year-round.  KY summers are really no cooler than FL summers, and overall, we believe we can be more active and lead healthier lives in FL.

I have spent hours trying to find out more about ISM via the internet and find conflicting information.  My MD tells me that SM is not an autoimmune disease, but I've seen it labeled that on some websites and blog posts.  I'm confused!  (This is of particular interest to me and important for me to understand because of a family history of autoimmune disease.)

My husband and I plan to travel to France this Fall, and I will be ordering a medic-alert bracelet before we go.  What should I put on the bracelet?  Your thoughts and suggestions would be appreciated.

I am in information-gathering phase, and feel blessed to have found this website and to read some of the information that many of you have shared.  I am humbled to read of the circumstances that many of you deal with daily, and promise to be an advocate for research funds to work toward a cure for this disease.

Beth  

Welcome Beth!
Im a fellow Floridian living with mast cell disorder too. There is A LOT of info on this site about Drs, Symptoms, meds etc. I hope you feel at home here , we will answer any question you have!
hugs
Ramona