Stiff Person Syndrome: Want to connect with others

Hi @mandymcintyre and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about Stiff Person Syndrome. I did this so you can connect with @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4,

Did your husband go to India for stem cell treatment because it is a treatment not approved in the UK?

Hi from U.K. my husband had a stem cell transplant in March 2020 in India, has anyone else had this treatment? He is still on medication but definate improvement and praying he will get full remission, I know he would like to talk to others who have this condition, thank you 🙏

I am taking baclofen and just started diazepam this week. My insurance approved IVIG again so I am going once a month. This does slow the progression.

What should I expect

That helps just to know someone else

Anyone out there gave stuff person syndrome

Hi @suzieflynn, please click this link https://connect.mayoclinic.org/discussion/stiff-person-syndrom/ and join the discussion with other members talking about stiff person syndrome like @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4,

@pattygail asked some of the same questions you're asking about what to expect and treatments options. Suzie, when will you be getting infusion treatment?

Any treatments that have worked im still waiting for infustion treatemen

thank you

@suzieflynn, If your question is how to do you contact Mayo Clinic, you can contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.