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).

@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.

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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.

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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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@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 @johnbishop, thank you so much! My insomnia kept me up all night and fortunately, I was able to navigate a bit. I was dx with SPS in 11/2009. I had to retire officially in 11/2011 (I was a Supervisor for the Federal Court and the Courtroom Deputy to our Magistrate Judge). A public SPS group opened 6/2012. Within a few months, I was asked to be an Admin. I was not well, but wanted to keep up my computer skills, just in case a miracle comes up. It's been a Volunteer Advocate since 2012. We have almost 2250 members. I have been networking with Advocacy Organizations. This year I created a project list and I've been researching PubMed, videos; basically, almost everything that would help our new members. I have been working like crazy. I thank you so much. I just received her notification. I looked up the wrong pages. I will get into those groups and connect with that group. You are a blessing. Thank you so much! You just made my day! Have a wonderful day! 🙂

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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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Hi @mrsbv you may have noticed I moved your post to this existing discussion on stiff person syndrome, per @johnbishop's suggestion, so that you can connect with others with similar experience.

I wanted to thank John for responding and sharing the website where you may be able to find a specialist.

Thank you for sharing your story. How are you symptoms nowadays?

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Hello, I was sent a link to this thread, in a reply to another thread on undiagnosed autoimmune disorders. Until today, I’ve never heard of SPS, but so many of my symptoms are stop on with what’s been mentioned above. When I Googled for SPS, the site I found said muscle spasms (some bad enough to break bones) are a primary symptom. I definitely don’t have that, other than some muscle twitching every few days. If any of the previous posters happen to read this, will yo please tell me if you or your loved one with SPS has this type of muscle spasms. Without that element, I have the chronic daily pain, balance and anzxiety issues, etc, that I’ve read above. Thank you. Bryan.

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I was duagnosed3 years ago. Have been on Ivig I fusion of gammagard for 2 years. The doctors think I've had this for 12 plus years. Any questions just ask.

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It's a tough condition. Has IVIG helped?

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