Need guidance on which specialist GP should refer

[konak]

My GP is clueless about Mastocytosis. Asking me which specialist should she refer me to.

I was diagnosed with mytocytosis by a skin specialist 2 years ago. I did not read up anything about it and in my mind it was some sort of skin allergy and I just have to take antiallergy.

Meanwhile I had stomach problems which was diagnosed as IBS and heart palpitations I has from my teenage and no doctor could figure out way and recently I had episodes of swollen glands . So my worry is that now it is no longer a skin problem and I should get checked out what is going on. The phone consultation with GP was me reading out from Wikipedia as she did not know much. Can someone please help where to start. I asked her about this test called Tryptase which I read online but she said it is not available in NHS. Also in panic as when I googled "life expectancy for mastocytosis" is says ' is 5 years after first diagnosis'. I am a single mom of 6 years old and now in total panic.

[Hidden]

Please do not panic. There are three stages, and most people are diagnosed at the indolent stage. There is no reason why it should progress to the smouldering and aggressive stages. I was in A&E twice in the New Year after suffering from this illness unknowingly for most of my lifetime. I am now in my late 50s. The second A&E doctor admitted me and I was discharged with his recommendation to go to my GP and push for answers. I actually went on several cancer pathways as all the obvious was ticked off. My GP tried very hard, but I eventually worked it out for myself. I am symptom free by following a very low histamine diet (milk, eggs, oats, white potatoes, cottage cheese, water, decaff coffee and Nestle gluten free cornflakes). I am also on a lot of meds and a decent multivitamin etc. Exercise also releases histamine, so I confine myself to a one mile walk a day. I feel the best I have in years. Pain-free in my joints, head is clear, depression and anxiety gone, tinnitus gone, energy back to normal, swellings, pruritis and CIU disappeared, IBS under control. I still have high platelet levels and GERD though, and can go downhill quickly if I stray outside my diet. I sleep a lot. Blood tests for tryptase are tricky so the preferred diagnosis is via a bone marrow biopsy. I don't know where you live but there are specialists in Oxford, Manchester and London. Good luck.