Stiff Person Syndrome: Want to connect with others

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.

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?

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.

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?

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/

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/

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

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

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.

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