Stiff Person Syndrome

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).

@maritakelly

Thank you for getting back to me. My sister was originally diagnosed with ALS in 2000 at the University of Pa. Hospital. She was later, 2010 taken out of the ALS diagnosis but still no diagnosis for what was wrong. She was finally diagnosed by Dr. Ogue, neurologist, at Shands Jacksonville with Stiff Man Syndrome and Dystonia. She brought her old EMG from 2010 and was diagnosed on the spot with SPS at Shands in October 2017. She received 30 Botox injections via EMG for Dystonia symptoms over a month ago. This appears to have made her symptoms worse. She is in a tremendous amount of pain. She is taking Valium and Baclofen now as well. Although we are grateful to the neurologist who finally diagnosed her, we are looking for another specialized neurologist to treat her long term for both SPS. We know there is an excellent neurology clinic at the Mayo in Jacksonville but they are not taking any new patients as hey are at capacity with no waiting list either. We are not sure where to turn. We appreciate any help and information you can provide. Thank you, Marita Kelly

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@maritakelly It sounds as if your sister has really been trying to come up with the correct diagnosis and treatment. I can certainly understand how difficult it must be not to find a treatment that works well for her.

Will you keep in touch and let us know how she is doing?

Teresa

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@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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Darlene

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

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@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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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 !!

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@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 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

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@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 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!

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@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

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

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

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@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

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/

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