1. < Brain & Nervous System

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.

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)
@becsbuddy

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

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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

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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)
@michellewi

Hello @peggi
I am from Wisconsin also diagnosed with SPS in 2012 and I am getting progressively worse. I currently go to SSM Health. Would you be willing to share who your doctor is at UW? My insurance covers both. I am looking for a specialist not just a neurologist. Thank you, Michelle

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I’m looking as well

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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)
@michellewi

Hello @colleenyoung My mobility varies from day to day. I need assistance walking in any open spaces. I wish I could say I do something to help maintain mobility but I basically try to make it through the day without having to hug the wall or asking for someone's assistance. It is purely stiffness that makes it unsafe for me walk for fear of falling. I have range of motion in my legs when I am in my home, I do stretches in the morning and at night. And I do this because it makes me feel good not so much for mobility. I have not had a lot of guidance with managing this disease accept for medication. I was trying IVIG until my insurance denied because of lack of randomized clinical trials. I have not had it in over 18 months. IVIG seemed to help me at lower doses to return to my normal.
I appreciate you inviting others into the conversation.

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what meds are you taking?

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1 reply
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)
@colleenyoung

Hi @suzieflynn and welcome to Mayo Clinic Connect. I look forward to getting to know more about you. What treatments have you had or medications do you take for stiff person syndrome? Do you fall frequently?

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low dose baclofen 5mg pt and waiting for infusion

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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

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1 reply
Mentor
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

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

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@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/

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Moderator
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)
@suzieflynn

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

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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/

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suzieflynn | @suzieflynn | Jul 12, 2020
In reply to @sandra319 "Does anyone have stiff person syndrome? If so was oy diagnosed with gad65 blood test ?" + (show)
@sandra319

Does anyone have stiff person syndrome? If so was oy diagnosed with gad65 blood test ?

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yes

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