Quote:
Originally Posted by DavidHC
Mat52,
I just wanted to add again that I'm sorry for your woes and appreciate you sharing your story. But also, regarding mast cells activation syndrome, that I posted this a short while ago, which you may or may not have seen: http://neurotalk.psychcentral.com/thread233192.html. The article is useful. And I myself have begun using quercetin. It may be too soon to say, but it may be that my allergic reaction or food sensitivities have minimized even in the last week. But I can't be sure, and apparently it may take a few weeks and in some cases months. It may be worth giving it a try, if you think that mast cell mediators are at issue for you. |
Thanks David - I missed this thread and also not sure about trying any more meds without the thumbs up from my rheumatologist or neurologist because of all my allergies. Like you I'm quite sure I have an immune mediated polyneuropathy. I strongly suspect mine is a rare type of Sjogrens because of the previous non-erosive RA history.
But as you know getting anyone to diagnose and treat it with negative or equivocal autoantibodies, is another thing entirely. I'm not sure where you live? I've read JJ's comments with great interest and agree it's not something to leave because mine is advancing quite badly now and the autonomic issues are quite scary. I'm going to be starting off with a neurology doctor (not yet a consultant neurologist) at the Ninewells Hospital in Dundee, Scotland soon and also switching to rheumatology there but not too hopeful really now even though it's one of the largest teaching hospitals in Europe. The dizziness is rapidly worsening so I'll read your thread about Mast Cells etc with great interest - as I have this thread too. Thanks for your suggestions and good luck to both of us eh
! Mat