Hi Kathy, So sorry for all the ups and downs you are going through. At least now you know why your body tried to give you signals and you had the courage to ask questions.I share your disappointment in having been on all these potentially toxic drugs in vain. But you know my story. Keep asking questions and learn as much as you can about this new diagnosis: LGMD. Are you close to an MDA clinic? Perhaps a doctor there will confirm this latest dx.
As far as I know there are no treatments for this disease either but I have not looked that closely into it. In a way if the dx had been changed to IBM you would be in the same boat now with no treatment available.
A friend of mine in Germany had the dx of IBM which later was changed to LGMD. These are just not run of the mill diseases and not all doctors are as informed as you want them to be and some tests are not as clear cut.
Please don't despair about this latest hurdle, try to stay upbeat. Hugs and prayers. Dagmar/IBM