Thanks for that, Haven’t tried low salt (not that I eat a lot) or steroids. Steroids would probably sort my autoimmune kidney problem too but have had no luck getting refer because my renal function is still ok.
Will work my way through the book and find about induced chiari. Is there any particular EDS related reason why lumbar puncture pressure should appear normal even with proven high pressure symptoms?
The book. The blue bits are so hard to read that I jump past them…a change would help and should be relatively easy in a PDF shouldn’t it?
I have had 4 surgeries for other EDS related things (one worked well, the others didn’t) in the last year and another one for a shunt doesn’t appeal but am struggling so much with it all that I would do anything to sort it.
Clotting. Had two proven DVTs, last one when on Fragmin in hospital but no referral to specialist. Now on Warfarin for ever but have had trouble getting consistent level and still being tested every four or five days, quite tiresome but better than getting DVT. EDSers seem to get sticky blood problems…
On another direction: I have recently spent nearly two weeks in hospital after urology op (that didn’t help but didn’t really expect it to) and nasty infection …I really enjoyed the rest and felt much calmer. Had sudden realisation why…I was allowed to be ill and allowed not to cope…I have spent the last 20 years pretending to be normal and pretending to cope with pain, tiredness and pretending I could work too. It was so good just to just be allowed to be ill for a while.
Thanks for the book. Have past link to my lovely local doctor, the first to be interested enough to find out about EDS etc and willing to refer me to the dpctors my research has found.
All the best for Christmas.
Brian