Stiff Person Syndrome: Want to connect with others

Posted by Suzanne Leaf-Brock @suzanneleafbrock, Jul 5, 2011

Am interested in connecting with people who have this or are significant others of people who have this condition. (I'm in the latter group).

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

John, Volunteer Mentor | @johnbishop | Jul 12, 2020

In reply to @suzieflynn "how do i contact them" + (show)

@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.

suzieflynn | @suzieflynn | Jul 13, 2020

In reply to @johnbishop "@suzieflynn, If your question is how to do you contact Mayo Clinic, you can contact one..." + (show)

thank you

suzieflynn | @suzieflynn | Jul 22, 2020

In reply to @pattygail "Dose any one have sps that can give some info" + (show)

Any treatments that have worked im still waiting for infustion treatemen

Colleen Young, Connect Director | @colleenyoung | Jul 22, 2020

In reply to @suzieflynn "Any treatments that have worked im still waiting for infustion treatemen" + (show)

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?

suzieflynn | @suzieflynn | Jul 22, 2020

In reply to @pattygail "Dose any one have sps that can give some info" + (show)

Anyone out there gave stuff person syndrome

suzieflynn | @suzieflynn | Jul 22, 2020

In reply to @pattygail "Dose any one have sps that can give some info" + (show)

That helps just to know someone else

suzieflynn | @suzieflynn | Jul 26, 2020

In reply to @pattygail "Dose any one have sps that can give some info" + (show)

What should I expect

michellewi | @michellewi | Sep 15, 2020

In reply to @suzieflynn "what meds are you taking?" + (show)

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.

mandymcintyre | @mandymcintyre | Oct 29, 2020

In reply to @pattygail "Dose any one have sps that can give some info" + (show)

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 🙏

Colleen Young, Connect Director | @colleenyoung | Oct 29, 2020

In reply to @mandymcintyre "Hi from U.K. my husband had a stem cell transplant in March 2020 in India, has..." + (show)

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?