doggus Posted October 11, 2011 Report Share Posted October 11, 2011 Hi everyone - I have been diagnosed with POTS and EDS 3 by Prof Mathias. I am also pretty certain I have a mast cell disorder though when my tryptase was tested it was 11 (has to be over 20 for mastocytosis here in the UK). My big issue is food - am down to only a few foods and even they cause major reactions - flsuhing, tachycardia, faintness, itchiness, severe muscle and joint pain, you name it. I also get angioedema. i am having a real job getting anyone to link the three diseases and get me a MCAD diagnosis. i went to see the top mastocytosis doctor in london and while I am sure he is great for that he doesn't really 'do' MCAD.Has anyone had any success here in the UK with mast cell side of things? Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 11, 2011 Report Share Posted October 11, 2011 So sorry that you are dealing with all of this. Many of us with this triad have been meeting at another International Yahoo site. I have personally "met" hundreds of patients with all three disorders. By banding together (sharing symptoms, etc.), we are helping to make top docs aware of this constellation. You may want to pose your question there as members are from all over the world. http://uk.groups.yahoo.com/group/theelephantproject/All the best-Julie Quote Link to comment Share on other sites More sharing options...
doggus Posted October 11, 2011 Author Report Share Posted October 11, 2011 Oooh thank you so much Mack's Mom. I am going to that forum IMMEDIATELY! Quote Link to comment Share on other sites More sharing options...
bensman Posted October 11, 2011 Report Share Posted October 11, 2011 Thanks for the reminder about that site, Julie. I had forgotten about it.Good luck Miss Marple!! I hope you find someone to help you. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.