Stiff Person Syndrome: Want to connect with others

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?

I was diagnosed at the Mayo three years ago at 21, the truth is no one knows what causes it and every medication I've been prescribed doesn't have effects for the stiffness or pain except benzos and pain killers. The disease gives you severe anxiety and depression because no one understands the feeling except the people that have it, which are few. Tramadol and Valium/clonazapam have been the best medications for me.

You describe almost exactly my symptoms. I've had it for more than 20 years. Was finally given a tentative diagnosis in 2008 based on my symptoms and EMG. Basically, everything else was ruled out. I know people wonder why I use a walker when I generally walk pretty well, but if you take it away (unless I'm at home with a cane) I stiffen and cannot walk. I retired in 2008 and my symptoms are much better due to less stress but I'm afraid I will never get away from the walker.

jHi Nutmeg, These are not problems that my husband has mentioned to me, so I don't have experience with them. I sure hope that you can find answers and relief. My husband says that changes in the weather and temperature affect his symptoms. He does get dizziness sometimes, but that might be inner ear disorder and not Stiff Person Syndrome. I don't know, I'm not a doctor, but just trying to help.

Suzanne, I also have stiff persons syndrome. I was just diagnosed last summer. I don't have it too bad as it just occasionally effects my left leg and mid-section to where I stiffen up. I am now taking medicine for that but I also tried IVIG and I don't think it helped. My biggest problem is I can't walk through parking lots, or even walk outside without some kind of assistance and I get kind of dizzy and scared. I also tend to have a problem when walking in front of other people unless I have my cane or walker with me. I didn't know if this disease tends to get worse or not. I do much better in the summer it seems than in the winter. I just can't even walk down the sidewalk on my own, however I can walk in my own home and my office without any assistance. Makes no sense to me. I am on an anti-anxiety drug but it doesn't seem to help this part of it. I guess I'm lucky as I don't have pain.