Morgo220..........my sympathies go out to you and your family. I had a brother who recently passed away from the same condition in NZ and we could not get the "products" suggested to you here as they were illegal in NZ at the time [may still be] but investigations did show they could work for some people.
My only suggestion is to look outside mainstream medical advise as quickly as possible.
Best of luck, take care
Yak52
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