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 group.

@pattygail

Dose any one have sps that can give some info

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yes it was with the blood test and spinal tap I have been diagnosed for about 7years

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@pattygail

Dose any one have sps that can give some info

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Best wishes to you

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@sandra319

Best wishes to you

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what were some of your signs of stiff person

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@pattygail

Dose any one have sps that can give some info

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Dropping things stiffness tremors falling chronic pain high gad 250 plus can’t walk or sit long etc.

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@sandra319

Dropping things stiffness tremors falling chronic pain high gad 250 plus can’t walk or sit long etc.

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I didn’t have tremors but had a lot of pain in my leg at night it would act like ressless leg it took about 2years before I was diagnosed with stiff person

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@sandra319

Dropping things stiffness tremors falling chronic pain high gad 250 plus can’t walk or sit long etc.

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Best wishes to uou

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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.

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@nutmeg

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.

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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.

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@nutmeg

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.

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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.

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@pattygail

Dose any one have sps that can give some info

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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.

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@pattygail

Dose any one have sps that can give some info

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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?

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@pattygail

Dose any one have sps that can give some info

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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.

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