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.

Alma Villarreal | @mrsbv | Jul 7, 2019

Hello. Can anyone tell me if there is a list of U.S. Neurologist Specialist and Neuromuscular Specialist for the U.S. Thank you.

REPLY
2 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 2, 2019
In reply to @njgenevieve "Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance,..." + (show)
@njgenevieve

Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance, Small Fiber Neuropathy and now Stiff Person Syndrome. Ivig treatments for past 6+months with minimal affect. Neurologist referred me to Hemotologist/Oncologist due to very high GAD-65. Hemotologist/Oncologist recommended whole body pet scan. Now pending insurance for over 2 weeks. Just received call from Hemotologist/Oncologist stating SPS is Neurological and can't understand why my Neurologist referred me to him. He told me he will get in touch with my Neurologist to find out what prompted him to refer me. This was same discussion over 2wks ago in his office. I honestly feel I'm in the twilight zone. I do realize SPS is extremely rare, but can't one of my doctor's atleast point me in the right direction? Any recommendations on who or where to go for this would be appreciated.

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Hi, @njgenevieve - just wanted to touch base and see how things are going with the stiff person syndrome and also with your doctor visits? Was it determined which specialist was best to care for you?

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Suzanne Leaf-Brock | @suzanneleafbrock | Jun 12, 2019
In reply to @lisalucier "Hi, @njgenevieve - I'm sorry you feel you're in the twilight zone and you're experiencing some..." + (show)
@lisalucier

Hi, @njgenevieve - I'm sorry you feel you're in the twilight zone and you're experiencing some bouncing from one specialist to another. Hoping that one of your doctors can indeed point you in the right direction.

Some of the other members in this discussion may have some ideas on to whom or to where to go now with your stiff person syndrome treatment, like @suzanneleafbrock @msdee @nutmeg @maritakelly @pollyanna777 @ndville and others.

Have you had the chance to follow up with the hematologist/oncologist?

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Hello, I work at Mayo Clinic and my husband was diagnosed here with stiff person's syndrome. The definitive diagnosis came from a blood marker they found. I can't think of the name of it at the moment, but if you have it, then you have stiff person's. I don't know why your neurologist referred you to oncology, but perhaps he wanted to rule out that there wasn't anything else going on. It is a very difficult disease to manage and lots of rest, lots of heat (wearing layers of clothing) seem to help Tony in addition to the medication. He went through plasma exchange and it did not help, they help some people but not others and there doesn't seem to be a reason why that is known at this time. Wishing you the best.

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 11, 2019
In reply to @njgenevieve "Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance,..." + (show)
@njgenevieve

Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance, Small Fiber Neuropathy and now Stiff Person Syndrome. Ivig treatments for past 6+months with minimal affect. Neurologist referred me to Hemotologist/Oncologist due to very high GAD-65. Hemotologist/Oncologist recommended whole body pet scan. Now pending insurance for over 2 weeks. Just received call from Hemotologist/Oncologist stating SPS is Neurological and can't understand why my Neurologist referred me to him. He told me he will get in touch with my Neurologist to find out what prompted him to refer me. This was same discussion over 2wks ago in his office. I honestly feel I'm in the twilight zone. I do realize SPS is extremely rare, but can't one of my doctor's atleast point me in the right direction? Any recommendations on who or where to go for this would be appreciated.

Jump to this post

Hi, @njgenevieve - I'm sorry you feel you're in the twilight zone and you're experiencing some bouncing from one specialist to another. Hoping that one of your doctors can indeed point you in the right direction.

Some of the other members in this discussion may have some ideas on to whom or to where to go now with your stiff person syndrome treatment, like @suzanneleafbrock @msdee @nutmeg @maritakelly @pollyanna777 @ndville and others.

Have you had the chance to follow up with the hematologist/oncologist?

REPLY
1 reply
njgenevieve | @njgenevieve | Jun 11, 2019

Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance, Small Fiber Neuropathy and now Stiff Person Syndrome. Ivig treatments for past 6+months with minimal affect. Neurologist referred me to Hemotologist/Oncologist due to very high GAD-65. Hemotologist/Oncologist recommended whole body pet scan. Now pending insurance for over 2 weeks. Just received call from Hemotologist/Oncologist stating SPS is Neurological and can't understand why my Neurologist referred me to him. He told me he will get in touch with my Neurologist to find out what prompted him to refer me. This was same discussion over 2wks ago in his office. I honestly feel I'm in the twilight zone. I do realize SPS is extremely rare, but can't one of my doctor's atleast point me in the right direction? Any recommendations on who or where to go for this would be appreciated.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 2018
In reply to @pollyanna777 "Can't figure out how to start a discussion . Help?" + (show)
@pollyanna777

Can't figure out how to start a discussion . Help?

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Pollyanna777, You can learn how to start a discussion, follow groups and much more in the Get Started guide here: https://connect.mayoclinic.org/get-started-on-connect/

If you have further questions about Connect, please feel free to send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

Welcome to the community! You mentioned that you are a "significant other". Are you supporting someone living with stiff person syndrome?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 2018
In reply to @pollyanna777 "Significant other here; just found this blog and would like to talk, but time prevents me...." + (show)
@pollyanna777

Significant other here; just found this blog and would like to talk, but time prevents me. Just wanted to get this website out to anyone in need; will be back here as soon as I can. (just found out this board won't let me give out links) Google " NORD " (National Organization for Rare Disorders) and "Stiff Person Syndrome" Hope this is helpful.

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Hi @pollyanna777
You will be able to post links after being an active member of Connect for a few days. Preventing first time members from posting a link is a security measure to prevent spammers. It is important to us to keep Connect spam free.

I love the NORD website. Allow me to post the link to the Stiff Person Syndrome information you wanted to post. https://rarediseases.org/rare-diseases/stiff-person-syndrome/

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 2018
In reply to @maritakelly "Hi. My sister was just diagnosed with Generalized Dystonia and Stiff Person Syndrome. We live in..." + (show)
@maritakelly

Hi. My sister was just diagnosed with Generalized Dystonia and Stiff Person Syndrome. We live in Ormond Beach, Fl. Just north of Daytona. We are having a difficult time finding a doctor to treat her. The Mayo in Jacksonville does not have an opening for this diagnosis. She has gotten one set of Botox injections from a doctor at Shands but she has gotten worse. We are unsure of where to turn. She has been prescribed Baclofen and Valium as well. She was neg for GAD and for cancer. They are calling this idiopathic Stiff Man Syndrome. In other words they really do not know why she has this disease. But it seems a small subset of people with Stiff Man Syndrome have the idiopathic type. Does anyone know a doctor in the Central or Northern Florida area who treats this disease? I would love to hear from anyone. Because she is so dilbiltated she cannot use the computer at the moment and I am helping her with the search. Thank you, Marita Kelly

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Hi Darlene @msdee004
Your messages to Marita @maritakelly and the rest of the group are posting perfectly on Connect. Click VIEW & REPLY in the email notification and you will see your messages in the discussion thread.

Thank you for sharing the information about the in-person support group for people living with ataxia in Tampa, Florida. Please note that I removed your personal telephone number. We recommend not sharing personal contact information since Connect is a public site. It is safer to use the private message function for this purpose. You can learn how to send a private message, start a discussion, follow groups and much more in the Get Started guide here: https://connect.mayoclinic.org/get-started-on-connect/

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pollyanna777 | @pollyanna777 | Mar 4, 2018

Can't figure out how to start a discussion . Help?

REPLY
1 reply
msdee004 | @msdee004 | Mar 4, 2018
In reply to @pollyanna777 "Significant other here; just found this blog and would like to talk, but time prevents me...." + (show)
@pollyanna777

Significant other here; just found this blog and would like to talk, but time prevents me. Just wanted to get this website out to anyone in need; will be back here as soon as I can. (just found out this board won't let me give out links) Google " NORD " (National Organization for Rare Disorders) and "Stiff Person Syndrome" Hope this is helpful.

Jump to this post

Thanks for your reply but I was able to send her the message! Thanks

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