Question: Hi I have been diagnosed with a mast cell activation disorder, a weird range of constantly changing symptoms that have included random inflamation, flushing, wheezing, abdominal pains . My symptoms are exacerbated and can be triggered by pressure on my lower back e.g sitting or indeed vibration such as standing on a train. I can not sit or lie on my back. I had a 98ga pet scan that showed an area of focus in my left sacrum but a focused mri just showed a “ congenital bone anomoly ” This seems an incredible coincidence, is it possible to have a localised mast cell activation disorder which somehow results in systemic mast cell degranulation somewhere else in my body. If I sit down I get taught sensations across my lower back and through the trunk of my body and my blood pressure goes very high

Hi the haemotologist has discounted systemic mastocytosis I have had a bone biopsy and the c kit test , both were normal. My serum tryptase level was 5. I have a endocrine professor coordinating my tests, he referred me to the haematologist. When the tests came back negative the prof said he was surprised and did some research and found a recent paper by a prof Afrin at the university of South XXXXXXX that describes in great detail a disorder called mast cell activation disorder. It appears systemic mastocytosis is a rare subset of much more prevalent mast cell disorders. The prof seems confident that this is what I have, but there is a very clear localised element to my symptoms. E.g pressure on my buttocks can trigger a taught abdomen, effects my breathing and for a period over the summer my hands would go red ! There is a paper by a professor valent of the uni of Vienna on mast cell activation disorders , in that paper there is a sentence that refers to the need "to discount localised mast cell activation" I am trying to find out more about what this could mean. Over a year ago when the posture related trigger first became clear I found that sitting in a certain position would trigger a taught warm sensation across my lower back and after a minute my chest would go tight and I would wheeze. Weird symptoms that I suspect can only have a simple answer, no matter how rare you might think it is. Can you shed some light on prof Valents statement ? Thanks

Assuming I have something in my lower back that is causing localised mast cell activation what are the reasonable next steps I could ask to be taken to further the investigation. I have this focus from the pet scan on my left sacrum which under a focused mri showed up as a congenital bone abnormality. How does one identify localised mast cell activation, from prof Valents paper it is obviously possible as he says it is important to discount it ? Will anything show up on any other type of scan ? Is a pet scan focus enough justification for a ct guided needle biopsy ? The bone anomaly seems a amazing coincidence given it is a mast cell anomaly, is there anything that can be done to investigate that, e.g is a bone scan likely to be any use ? Is there any thing published on this subject ? Thanks XXXXXXX