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.

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/

REPLY
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

REPLY
pollyanna777 | @pollyanna777 | Mar 4, 2018

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.

REPLY
2 replies
msdee004 | @msdee004 | 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

Jump to this post

Hi Marita my name is Darlene, I live in Tampa, FL and I was diagnosed with SPS in August 2011 by my wonderful doctor, Theresa Zesiewicz (a neurologist at USF) 813-974-5909. I was referred to her by my son neurologist for Ataxia (a degenerative nerve disorder) similar to MS. Yes I have a double whammy. Ataxia/SCA5 & SPS! Dr.Z (what she is often called) did a thorough examination on me for Ataxia, and she noticed my gait so she said that she wanted to test me for SPS. And her notion was correct the test came back positive for SPS.
Dr. Z put me on IVIg treatment for about 2 years and it really helped me, but I had an allergic reaction to it so she stopped it. So she went to work looking for me something else that would help me and she came up to Plasmapheresis. I get it every 3 months at TGH where I'm hospitalized for 10 days Bcas I receive the treatment once every other day for 5 days. And let me tell you that it really helps it gives me a boost of energy!

We have a support group for Ataxia in Tampa at USF Morsani center which I am the president of. We meet every other month on the third Saturday. But for this month we are meeting on March 24th (Bcas I will be out of town on 17th) and we are meeting at a different location for this month only.

St Joseph’s Hospital North
Twiggs Cafe
4211 Van Dyke Rd
Lutz, FL 33558
12:30-3:00pm

I could go on & on but if you want to contact me please feel free to do so by sending me a private message.

Respectfully,

Darlene

REPLY
msdee004 | @msdee004 | 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

Jump to this post

Hi Martha my name is Darlene, I live in Tampa, FL and I was diagnosed with SPS in August 2011 by my wonderful doctor, Theresa Zesiewicz (a neurologist at USF) 813-974-5909. I was referred to her by my son neurologist for Ataxia (a degenerative nerve disorder) similar to MS. Yes I have a double whammy. Ataxia/SCA5 & SPS! Dr.Z (what she is often called) did a thorough examination on me for Ataxia, and she noticed my gait so she said that she wanted to test me for SPS. And her notion was correct the test came back positive for SPS.
Dr. Z put me on IVIg treatment for about 2 years and it really helped me, but I had an allergic reaction to it so she stopped it. So she went to work looking for me something else that would help me and she came up to Plasmapheresis. I get it every 3 months at TGH where I'm hospitalized for 10 days Bcas I receive the treatment once every other day for 5 days. And let me tell you that it really helps it gives me a boost of energy!

REPLY
1 reply
msdee004 | @msdee004 | 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

Jump to this post

Hi I'm trying to send the following information to Marita Kelly but it won't go! Can you help me? Thanks

We have a support group for Ataxia in Tampa at USF Morsani center which I am the president of. We meet every other month on the third Saturday. But for this month we are meeting on March 24th (Bcas I will be out of town on 17th) and we are meeting at a different location for this month only.

St Joseph’s Hospital North
Twiggs Cafe
4211 Van Dyke Rd
Lutz, FL 33558
12:30-3:00pm

I could go on & on but if you want to contact me please feel free to do so by sending me a private message.

Respectfully,

Darlene

REPLY
ndville | @ndville | 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

Jump to this post

Hello. My sister was diagnosed with stiff persons syndrome about 4 years ago at Houston Methodist in Houston Texas, and it is hard to get a physician to help her. She has tremors that last for hours and will only be helped with Valium. I called John Hopkinsin Baltimore to ask for help, they said they would make an appointment to see her, let's hope that works out.. Right now she is trached because she has trouble breathing and they won't see her until she is released from therapy. We live in Louisiana in a rural area so our options are limited. I read on many sites medicinal marijuana helps allot. Praying for everybody with this disease !!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 28, 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

Jump to this post

Hi @msdee004, welcome to Connect. We look forward to getting to know you. Do you have stiff person syndrome?

REPLY
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