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Diagnosed with mast cell activation disorder. Wheezing, inflamed feet and abdominal pain. CT scan showed a focus on left sacrum

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Hi I have been diagnosed with a mast cell activation disorder. I have systemic symptoms , flushing, wheezing, inflamed feet etc. A source and a trigger for my symptoms is my lower back. Initially I would get abdominal pains and wheeze when I sat in a particular position, my blood pressure also spike. I had a 98Ga pet/ct scan that showed a focus on my left sacrum but a follow up focused mri just showed a congenital bone abnormality. Is it possible to have a localised source of mast cell activation that would explain both the very specific local effect of my symptoms as well as their systemic effect ? Thanks XXXXXXX
Posted Wed, 27 Nov 2013 in Blood Disorders
Answered by Dr. Indranil Ghosh 4 hours later
Brief Answer: Unlikely to have a specific focus Detailed Answer: Hi Thanks for your query. Mast cell activation (MCAS) is a rare disorder. However, it is unusual to have a solitary focus of activated mast cells which is causing all the symptoms. Usually it is generalized activation. It may or may not be associated with systemic mastocytosis (an increase in plasma cells in bone marrow or other organs). MCAS can be diagnosed by suggestive clinical features (which you have) along with increase in serum tryptase level or an increase in other mast cell-derived mediators, such as histamine or prostaglandin D2 (or their urinary metabolites) and response of clinical symptoms to agents that attenuate mast cell mediator (like antihistaminics). Localised mast cell proliferations are very rare. You may find the following resource useful WWW.WWWW.WW Hope I have answered your query. I will be available to answer further followup queries, if any.
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Follow-up: Diagnosed with mast cell activation disorder. Wheezing, inflamed feet and abdominal pain. CT scan showed a focus on left sacrum 4 days later
Thanks, what could conceivably cause the following symptoms Sitting in a certain position I would get a warm taught sensation across my lower back that would spread up my trunk and my chest would go tight and I would wheeze Sitting down causes abdominal tightness and my blood pressure spikes and for a period of months my hands would go red. Sitting or applying pressure even by lying down , on my buttocks , slowly triggers sensations through my trunk, chest and my breathing. As unusual as it sounds the only explanation I can imagine is some sort of localised mast cell activation. At night my buttocks burn and my lower abdomen twitches and gurgles. The problem is how does one find and prove a localised MCA if indeed that is what it is. My Ga98 pet/ct scan showed a focus on my left sacrum which seems an amazing coincidence. Is there any way of investigating this area of focus further, e.g with a tissue sample ? Thanks XXXXXXX
Answered by Dr. Indranil Ghosh 11 hours later
Brief Answer: See below Detailed Answer: Still, I would think that this is not focal. Sometimes postural variations are known to trigger mast cells. However, to rule out that focus seen in PET, we can do a CT guided biopsy from the lesion. Regards
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