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).

Liked by mcrchicago

@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

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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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@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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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.

Liked by Dee

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@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 – 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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@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.

Liked by Lisa Lucier

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@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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@mrsbv

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

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Hello @mrsbv, Welcome to Connect. There is another discussion for Stiff Person Syndrome where I think your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion where you can meet other members with similar symptoms who may be able to share suggestions with you.

> Groups > Brain & Nervous System > Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

I'm not sure if you have tried this website but the American Association of Neuromuscular & Electrodiagnostic Medicine website has a link to search for a specialist: https://www.aanem.org/Patients/Find-a-Specialist. Have you been diagnosed with Stiff Person Syndrome?

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