Stiff Person Syndrome: Want to connect with others

Thank you @suzanneleafbrock for providing some first-hand experience. I'm glad that your husband found help at Mayo in Minnesota. I hope @maritakelly is able to find some help for her sister soon.

@maritakelly Would your sister be able to travel to Mayo in Minnesota if they had appointments available?

Teresa

So sorry to hear all this. I work at Mayo Clinic and my husband was diagnosed at Mayo Clinic in Rochester, Minnesota. That is actually where this condition was first identified and one of the key diagnostic tools is a blood test. My husband did not find baclofen to help, and is on a variety of meds, including neurotin. He tried plasma exchange as an experimental treatment, but that did not help him. Everybody responds differently to meds and treatments. He finds keeping his back really warm helps him, so he wears lots of jackets all the time, even in the summer, he wears fleece sweatshirts. As for dystonia, he does not have that, but a dear friend does and has turned to alternative medicine for much of her support to try to strengthen her neck, etc. She wears a neck brace that helps a lot. I have not heard her mention botox injections and I would have expected she would have told me if she had tried that. I am guessing that placement of those injections can make a difference, similar to when a steroid injection is given for a bad knee, it has to get put in the right place to really help. I am not a doctor or any type of professional care giver and what I'm saying is not anything official from Mayo Clinic. I just happen to work there, in the communications department. All the best and happy to talk more if that helps.

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

@maritakelly Hello Marita,

Welcome to Mayo Connect! Your sister is so fortunate to have you as her advocate. I found some information on the NORD website, here is the link, https://rarediseases.org/rare-diseases/stiff-person-syndrome/

A few other members have posted about this disorder as well. I will tag some of the members who have mentioned this disorder and perhaps they will join in a conversation with you @suzanneleafbrock @mcrchicago @judiff @nutmeg @fivets

If you are comfortable doing so, please tell us a bit about your sister's history with this disorder. For example, what type of specialist diagnosed this and what type of tests did she have?

We look forward to supporting you and your sister.

Teresa

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

Hi Nutmeg.. I have the same symptoms as you mentioned. I walk well at home but can't walk in open spaces. I can walk near a wall but panic if I don't think I can reach something stable. I walk fine if I hold onto to someone. How are you doing now? Did you continue the IVIG? Do you have type one diabetes? I do have hypothyroidism and Pernacious anemia. Thank you for posting.

I also do Nero Feedback and it helps with pain

Hello @hammere4, welcome to Mayo Connect. Thank you for sharing your story. I know it must be hard for others without stiff person syndrome to understand how you feel. I'm sorry that anyone has to go through it especially at a your young age. I would keep asking questions and searching for a better treatment to help you. You are your best advocate and there are a lot of Connect members that hopefully will be able to help you by sharing their story and what has worked for them.

I did find a research article from the National Institutes of Health from December 2015 - "Recent Advances and Review on Treatment of Stiff Person Syndrome in Adults and Pediatric Patients": https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727915/

If you haven't already had the chance, you might want to read through the postings of the other Connect members in this discussion.

Hoping for a pain free day for you.

John

Hi, I think my husband does not expect others to understand. He sometimes tries to explain it, but it seems people just don't get it or they forget. So for the most part, he doesn't expect people except his immediate family to truly understand. I think he chooses to just carry on as best he can and avoids much conversation about the disease or its impact, emotionally or physically. That probably doesn't help much, but that is what I have observed in his situation.

Hi, @hammere4, and welcome to Mayo Clinic Connect. I am glad you have joined us here.

Sounds like you've been through a challenging time trying to get the best medications for your condition.

I thought I'd ask if @nan45, @suzanneleafbrock, @pattygail, @lora, @shellwil, @twirlgirl101, and @judiff, who have discussed Stiff Person Syndrome previously, might have any thoughts to share, especially about the emotional effects of few people understanding this disease, due to its rarity?

I am sorry to hear about the anxiety and depression. Can you tell us more about what you've been experiencing with these?