Hello. I’m new here and wish to say thank you for being here. I guess I’m looking for others experiences and answers to try to make sense of what’s going on. I have SG from a post-viral autoimmune response and have had it for 12 years. My main issues are poor proprioception and trunk and leg dystonia/tremor that get worse with autonomic issues. Reflexes are all absent. Lately I’m getting sensory loss around my ankles and sharp pin pricks in my soles. However, weirdly, pain is not an issue and I am so grateful for that. It must be dreadful.
I’ve been lucky enough to have regularly received IVIg and Rituximab as well as daily mestinon and terrabenazine. I’m still walking and exercising daily. However I’m interested in people’s ways of managing the lack of proprioception and does it vary. Does exercise help you? If so what sort?
Thank you for any help and ideas you can offer.