Hi I was diagnosed with Mastocytosis following a skin biopsy 8 weeks ago. I have been symptomatic for the last year on and off and have vast skin lesions for ten years or more. I have been to clinic today and the registrar explained that there was evidence of mast cells within my bone marrow biopsy and CT thankfully clear. However he said that the amount of mast cells would not be causing the extensive symptoms that I am experiencing but want me to have a endoscopy and lung testing to rule out or confirm further infiltration. I have felt so ill for the last year that I am very frustrated that after already waiting for 8 weeks to confirm the outcome of tests I have now got to undergo further testing and wait another 8 weeks until reviewed again in clinic to discuss these results. Has anyone else found these issues a problem.
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