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Posts (9)

Nov 4, 2019 · Stiff Person Syndrome in Brain & Nervous System

Wishing you all the best for your appointment here at Mayo. That is where I work, but is also where my husband was diagnosed, in the Neurology Department. As you know, Mayo is known for listening, taking time with patients and finding answers.

Oct 14, 2019 · Stiff Person Syndrome in Brain & Nervous System

Hello. My husband has stiff person syndrome and tried numerous treatments. It does seem to be a trial and error for various options. Back spasms, tiredness, some gait issues are/were all issues. He also has experienced startle response issues that would cause spasms. Baclofin did not help him. He tried plasma exchange and after the first two, that was discontinued because he did not respond. Keeping his back really warm and sleeping a lot are two things that seem to help him that are non-prescription based. He also is an advocate of stretching exercises. I hope this helps and all the best to you.

Aug 1, 2019 · Stiff Person Syndrome in Brain & Nervous System

It's a tough condition. Has IVIG helped?

Jun 12, 2019 · Stiff Person Syndrome in Brain & Nervous System

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.

Jan 19, 2018 · Stiff Person Syndrome in Brain & Nervous System

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.

Aug 7, 2017 · Stiff Person Syndrome in Brain & Nervous System

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.

Apr 6, 2017 · Stiff Person Syndrome in Brain & Nervous System

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.

Jul 6, 2011 · Stiff Person Syndrome in Brain & Nervous System

We tried a number of drug therapies as well as plasma exchange for my husband. Some people respond better than others to different combinations of drugs. The chronic pain has its ups and downs, I’ve come to think of it as the degree of pain that he is encountering because it is never an absence of pain. For him the plasma exchange did not help; he was to have a series of three, but it was evident it wasn’t helping after the second so we didn’t continue.