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.

Colleen Young, Connect Director | @colleenyoung | Jul 11, 2020

In reply to @suzieflynn "Thank you very much Does anyone know what is going to happen to me" + (show)

Suzie, you may also be interested in this discussion with @pattygail @sandra319 and @hammere4,
- Stiff Person Syndrome https://connect.mayoclinic.org/discussion/stiff-person-syndrom/

John, Volunteer Mentor | @johnbishop | Jul 11, 2020

In reply to @suzieflynn "please someone tell me what is going to happen to me, I cant find anything online..." + (show)

@suzieflynn, I have no medical background or training but I'm not sure anyone can tell you what's going to happen because the prognosis varies depending on a person’s symptoms. You can find more information here:

Stiff Person Syndrome: Outlook / Prognosis:
-- https://my.clevelandclinic.org/health/articles/6076-stiff-person-syndrome/outlook--prognosis

Here is another patient story that you may find helpful -- Sharing Mayo Clinic: Diagnosed with stiff-person syndrome:
-- https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-diagnosed-with-stiff-person-syndrome/

suzieflynn | @suzieflynn | Jul 11, 2020

please someone tell me what is going to happen to me, I cant find anything online I have been on every website

suzieflynn | @suzieflynn | Jul 11, 2020

In reply to @colleenyoung "Hi @suzieflynn and welcome to Mayo Clinic Connect. I look forward to getting to know more..." + (show)

low dose baclofen 5mg pt and waiting for infusion

suzieflynn | @suzieflynn | Jul 11, 2020

In reply to @becsbuddy "@suzieflynn here is another website that may help you. Stay strong https://my.clevelandclinic.org/health/articles/6076-stiff-person-syndrome" + (show)

Thank you very much Does anyone know what is going to happen to me

suzieflynn | @suzieflynn | Jul 11, 2020

In reply to @michellewi "Hello @colleenyoung My mobility varies from day to day. I need assistance walking in any open..." + (show)

what meds are you taking?

suzieflynn | @suzieflynn | Jul 10, 2020

In reply to @michellewi "Hello @peggi I am from Wisconsin also diagnosed with SPS in 2012 and I am getting..." + (show)

I’m looking as well

suzieflynn | @suzieflynn | Jul 10, 2020

In reply to @becsbuddy "Good morning and welcome to Connect..Here is a discussion group about Stiff Person Syndrome (SPS). What..." + (show)

Thank you so much The infusion won’t start until at least next week because they have to have a pre-authorization from my insurance so I just don’t know what to expect did you lose your eyesight in my left eye or movement

Becky, Volunteer Mentor | @becsbuddy | Jul 10, 2020

In reply to @suzieflynn "Does anyone know what my path moving forward is going to be? Im going to do..." + (show)

Good morning and welcome to Connect..Here is a discussion group about Stiff Person Syndrome (SPS). What is the infusion that you will be getting? Is your physician a rheumatologist?
I, too, felt alone when I got my diagnosis because no one in my town had even heard of it. My brother in law, a toxicologist, sent me an article from a neurological journal that I made copies of and gave to doctors. Never hurts to do research and be your own advocate. I’m sitting here now, getting my infusion of rituxan, my wonder drug!
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/?pg=7#comment-388249