Mastocytosis Community
were do I go
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were do I go

Hi all I was diagnosed with systemic mastocytosis after 2 anaphylaxis fits mine has been in my bones causing ostoporosis I have had this as long as 25 years as I work full time shift work I have severe bone pain and numbness in both hands and feet were to from here ? thanks peter
351246_tn?1379685732
Hi!
I am sorry, but there is no cure for systemic mastocytosis. The treatment is mainly supportive and aimed at keeping the symptoms under control. Patients are asked to keep epinephrine injections or Epipen handy and taught to use it in emergency. Various chemotherapy or drugs are tried with variable response depending on symptoms. You cannot take beta blocker drugs. Also you need to be closely monitored before any tests and injections and procedures. Presence of anemia, leukopenia or low white blood cells and/or low platelets or thrombocytopenia, and or elevated lactate dehydrogenase worsens prognosis. Take care!
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