My masto story

Well since I haven't posted in a few days (been busy) I figured I would let those of you out there who want to know my mast cell disorder story hear it. Its long, but worth it in the end.

Well, where do I begin??

I have had UP (Urticaria Pigmentosa) for 30+ years. When I was diagnosed 1979 the doctor at Loma Linda University told my mom that if it didn't go away before puberty it would kill me. I had a few spots since I was born and she was like "I don't think so" and for the following 12 years I really received no treatment. My mom cut off milk and other things that "made me red", I would take oatmeal baths and I tried to hide my body from the world.

Then lets jump to 1991 because any one of us can fill in the years of pain and suffering in the middle!! I went to get my "spots" checked on because they were taking me over. The dermatologist was so happy to see a spotted person!!! He rubbed his hands together and asked if he could bring his colleagues in. Well needless to say I had 15 doctors and students crammed into my little room scratching and asking questions. I got scheduled for my first bone marrow biopsy and proceeded over the next 6 months to become stable with medication.

1995 found me giving birth to my son (when the doctors didn't think I could conceive) and that quickly followed with the birth of my daughter in 1997. I did not take any medications for 3 years and in November of 1997 I was ready to die because I was so sick, when I found TMS. Linda Bucheit took my call and I believe saved my life. I went back to the hospital that dealt with me in 1991 and they diagnosed me (based on gi biopsy and symptoms) with systemic mastocytosis. I now had another name to my hell.

Well after the WHO criteria came out for diagnosis I really didn't fit the mold so to speak and I decided why worry about the mold, I have SM and nothing is really going to change that. Then in 2006 I started having trouble walking and by the spring of 2008 I was ready for the grave. Lord knows I figured I would be there any time. I took the big step and decided to go to the Mayo Clinic and see Dr. Butterfield.
He is a wonderful man and with my previous tests being inconclusive (1997) bone marrow biopsy was stained wrong!! He ordered a 3 day series of xrays, tests, and a bone marrow. The hematologist I saw there was horrendous stating " I think you only have spots and don't have SM" Well I was happy for about 3 weeks. I mean he said I probably didn't have it, my mind refused to review my symptoms or my journey. So I went back to Mayo to meet with Dr. B and get the results of all the tests. He sat there so calmly reading from the computer, bone marrow involved greater than 5% mast cells, + c-kit mutation, unable to test for Jak 2 mutation, bone scan- osteopenia in spine and osteoporosis in left hip, on and on he went. I am sitting here alone, thinking OMG why did I ever believe that other doctor and give myself a little bit of hope. Needless to say I barely made the drive back home. Crying all the way. Wanda in Texas was my lifeline this time. Talking with me and comforting me from thousands of miles away!!! Wanda is the first person I ever compared spots with, and she has been stuck with me as a friend ever since!!

So now I have take a leave of absence from my 1 job and I work part time with the other. My job as my hubby put it was to get healthy, work out, and find time for me. He would like me around for a long time. I am on aspirin, claritin, doxepin, gastrocom, viactive, MVI, omega 3's, And have found life a little easier to live. The change in medications was life changing for me. It gave my part of my life back. I also stand in a NB-UVB light box for the spots. I had one installed in my house, so no more doctor appts. Life is getting better, day by day. Well that is my long drawn out story!!!