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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).
What symptoms does your significant other have?
Hello. My sister was diagnosed with stiff persons syndrome about 4 years ago at Houston Methodist in Houston Texas, and it is hard to get a physician to help her. She has tremors that last for hours and will only be helped with Valium. I called John Hopkinsin Baltimore to ask for help, they said they would make an appointment to see her, let's hope that works out.. Right now she is trached because she has trouble breathing and they won't see her until she is released from therapy. We live in Louisiana in a rural area so our options are limited. I read on many sites medicinal marijuana helps allot. Praying for everybody with this disease !!
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Please keep in touch. I hope her symptoms improve so that she can go to Johns Hopkins; and then I hope Johns Hopkins can help. I have seen online that Dr. Eric Newsome actually has an SPS Clinic.
No, I have not. For now, I am in a good space. Unless something comes along that does not produce side effects more problematic than SPS, I plan to stay with my regiment.
What is your current regimen, which appears successful?
Hi, @peggi – I would like to add my welcome to Mayo Clinic Connect. Sounds like you are having some walking trouble from your stiff person syndrome and are looking for other treatment since a shortage of immunoglobulin led to discontinuance of your therapy.
Hoping that @suzanneleafbrock @trs @fivets @ndville @stiffpersonsyndrome will share about the symptoms they or their loved one has experienced and also what regimen they are on and its effects, as well as offer their support. @hopeful33250 also may have some insights.
When is your upcoming appointment with the neurologist at UW Hospital in Madison? Are you having other symptoms beyond the walking challenges?
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.
Thank you, this is more helpful than anything doctors have done for me. Thank you.
I had my appointment with the neurologist at UW on Thursday, and she increased my IVIg to every 6 weeks. Hopefully there will not be another shortage.
No: My only symptom is loss of balance especially when walking outdoors: slants, curbs, gravel. I can walk 3 miles in 45 minutes with the use of walking sticks though. No pain. No startle reflex. If I stop to chat with someone, though, I am really stiff until. I walk a few steps though. Oh! And being cold really causes me to stiffen up. I feel like a statue.
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.
I was diagnosed with SPS with the finding of an elevated GAD antibody (1,451), My antineoplastic antibody titer was negative, as well as a normal colonoscopy, a negative breast biopsy, normal full spine MRI, negative head MRI, and several referrals to vestibular rehab, a spine specialist….I think that’s all. I was not referred to an oncologist.
I wish we could establish a method of discussion other than all of this typing; e.g. arrange a meeting place, a secure method of getting phone numbers via a Mayo facilitator, etc.
see if they set up a video chat room lol
Why is that funny? I think talking to others with SPS might come up with ways to deal with our balance issues.
@peggi, I too have balance issues. There is another discussion on Connect that may be helpful for those facing balance issues.
> Groups > Healthy Living > Having trouble keeping your balance?
Talking to others with similar conditions and symptoms can be helpful. Connect provides a Private Message function so that you can send messages to individual members to exchange information which can include email and phone numbers if the member wants to share and have a discussion by a phone call. The Get Started on Connect guide has all of the common "how to" tasks. There is a link to the guide in the left column of the footer on each page on Connect. Here is a link to the Private Message section — https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
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