Hi Jeff, you mentioned your SPS came on slowly and didnt start with falling over so im keen to share our stories in the hopes i might clarify if i have it or not. My neurology apt is still 3 months away and my GP has lost care factor for me due to his not understanding what's happening to me. I think he doesnt believe me?

Anyway, ever since i can remember i have had strangely stiffened muscles in my back and neck and in my calves. A GP years ago suggested it was shinsplits. Over the past 10 years i have had pain in my hips slowly develop to a constant pain (5/10) But ever since my thymectomy in 2011 for MG, i have suffered with muscle spasms in my upper back and neck that last between 2 to 4 days at a time, and then up to a further 7 to 10 (?) days to slowly return to a more manageble state but are never, ever relaxed. It limits my movement completely so i have to twist from my waist in order to look sideways, up or down. It is extremely painful (8 or 9/10) in the muscles themselves but also causes intense headaches (8 or 9/10). Many things can trigger these spasms ( ie. a sneeze, suddenly looking sideways, picking up a pen off the floor....) My head always feels heavy and like its ready to burst (?), i have very low tolerance to noise, and constant varying ringing. My GP thought it was just tinitis? Another symptom is my knees have slowly developed a painful pinprick kind of feeling into the caps when i stand or sit and cant bare to be twisted at all. I now have aids around my house to help stand and sit. (xrays show nothing so again my GP has dismissed it) And lastly my right thigh muscle has started spasming too, intermitently but particularly noticable at night time.

I have never suddenly gone stiff as a board and fallen over. And i have never had a spasm seisure like ive seen on utube. Could it be early stages as far as your experience goes? ? Not trying to make u a doctor or anything haha....i just feel very alone and tired of being in constant intense pain