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DiscussionSystemic Mastocytosis: Does anyone have bone pain?
Blood Cancers & Disorders | Last Active: May 19 12:42pm | Replies (8)Comment receiving replies
Replies to "After 2 1/2 years I was finally diagnosed with systemic mastocytosis. I would like to know..."
Hi Dianna, I’m so sorry to hear you are suffering with the same diagnosis as my son. I am desperate for answers too! My son has Osteoporosis as well and he’s only 23 yrs old. The pain in his back is so severe he uses a walker to get around at home and a wheelchair to get out of the house. I am certain the mast cells are affecting his bones and causing this debilitating pain! He also breaks out in uncomfortable rashes, welts, hives every single day. Especially on his face, arms, chest and back. He has reactions to his own sweat! He vomits every day and can barely eat any food at all….only formula. He also has POTS, Dysautonomia, Systemic Eosinophilic Disease (esophagus, lungs & blood), Autoimmune disease, Neuropathy, Gastroparesis, chronic SIBO, colonic dysmotility, bone tumors, esophageal tumors, zero esophageal motility…there’s so much damage that has been done..his suffering has been lifelong. He’s on biologic injections every week, he’s had IVIG infusions, Gabapentin, a ton of other medications but it’s all band-aid fixes. No real treatment has been FDA approved to treat systemic Mastocytosis yet. We are following trials and patiently waiting for a promising medication via infusion to become available. We are also researching how stem cell therapy might be able to help him. Look up Dr. Neil Riordan. We have friends that have had success with his treatments for other diseases.