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Originally Posted by MAT52
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 hospital 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 |
Ps I've just read up about quercetin and realise now that it's not a medicine - it's a component found in apples and other fruit and veg. I'm already pretty wholesome in my eating habits but haven't gone fully Paleo yet - mainly because we are moving around all the time presently and it's hard to follow a new diet with restrictions under these circumstances. But I have been wheat free for five years, eat a lot of fruit and veg especially apples and I don't think Paleo would be a huge shift for me. They say now that the Mediterranean diet is the most helpful one for RA sufferers - maybe this is why my RA has disappeared? However I have friends who have been on a Paleo diet for years and are still very sick with autoimmune arthritis so although diet helps I'm not sure it's at the heart of my own problems. Keeping an open mind though and this was an interesting read - many thanks!