1. < Brain & Nervous System

Stiff Person Syndrome: Want to connect with others

Posted by Suzanne Leaf-Brock @suzanneleafbrock, Jul 5, 2011

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).

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

peggi | @peggi | Oct 13, 2019

What symptoms does your significant other have?

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1 reply
peggi | @peggi | Oct 13, 2019
In reply to @ndville "Hello. My sister was diagnosed with stiff persons syndrome about 4 years ago at Houston Methodist..." + (show)
@ndville

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.

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peggi | @peggi | Oct 14, 2019
In reply to @trs "No, I have not. For now, I am in a good space. Unless something comes along..." + (show)
@trs

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.

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What is your current regimen, which appears successful?

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Lisa Lucier | @lisalucier | Oct 14, 2019
In reply to @peggi "What symptoms does your significant other have?" + (show)
@peggi

What symptoms does your significant other have?

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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?

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2 replies
Suzanne Leaf-Brock | @suzanneleafbrock | Oct 14, 2019
In reply to @lisalucier "Hi, @peggi - I would like to add my welcome to Mayo Clinic Connect. Sounds like..." + (show)
@lisalucier

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?

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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.

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speechless623 | @speechless623 | Oct 14, 2019

Thank you, this is more helpful than anything doctors have done for me. Thank you.

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1 reply
peggi | @peggi | Oct 14, 2019
In reply to @lisalucier "Hi, @peggi - I would like to add my welcome to Mayo Clinic Connect. Sounds like..." + (show)
@lisalucier

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?

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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.

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1 reply
peggi | @peggi | Oct 14, 2019
In reply to @suzanneleafbrock "Hello, I work at Mayo Clinic and my husband was diagnosed here with stiff person's syndrome...." + (show)
@suzanneleafbrock

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.

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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.

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peggi | @peggi | Oct 14, 2019
In reply to @speechless623 "Thank you, this is more helpful than anything doctors have done for me. Thank you." + (show)
@speechless623

Thank you, this is more helpful than anything doctors have done for me. Thank you.

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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.

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Oct 16, 2019
In reply to @peggi "I wish we could establish a method of discussion other than all of this typing; e.g...." + (show)
@peggi

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.

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see if they set up a video chat room lol

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