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.

@faithwalker007

see if they set up a video chat room lol

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Why is that funny? I think talking to others with SPS might come up with ways to deal with our balance issues.

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@peggi

Why is that funny? I think talking to others with SPS might come up with ways to deal with our balance issues.

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@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?
https://connect.mayoclinic.org/discussion/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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Hi @peggi, currently Mayo Clinic Connect is a text-based community. Of course, videos, images and documents can be attached as well to text responses. Video and phone applications are being explored for the community as well. A solution in the meantime might be to consider a Voice-to-Text application. Here's some information if you wish to look into it. https://www.thebalancesmb.com/best-voice-to-text-apps-4583053

Do you use or have you looked into voice-to-text technology? It has gotten quite good over the past few years.

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@njgenevieve

Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance, Small Fiber Neuropathy and now Stiff Person Syndrome. Ivig treatments for past 6+months with minimal affect. Neurologist referred me to Hemotologist/Oncologist due to very high GAD-65. Hemotologist/Oncologist recommended whole body pet scan. Now pending insurance for over 2 weeks. Just received call from Hemotologist/Oncologist stating SPS is Neurological and can't understand why my Neurologist referred me to him. He told me he will get in touch with my Neurologist to find out what prompted him to refer me. This was same discussion over 2wks ago in his office. I honestly feel I'm in the twilight zone. I do realize SPS is extremely rare, but can't one of my doctor's atleast point me in the right direction? Any recommendations on who or where to go for this would be appreciated.

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Sometimes, rarely, SPS is triggered by tumors that is why the neurologist refered you to a cancer specialist. If the tumor was taken care of, then SPS would likely go away.

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I’ve had symptoms since early 2016. I have overwhelming stiffness that affects my back, lower legs, and feet and also have muscle weakness. I thought ALS, but had normal EMG tests. I tend to think it could be Primary Lateral Sclerosis, which affects the upper motor neurons rather than ALS (which affects both upper and lower). Often PLS can turn into ALS. PLS can also take years to diagnosis. In late 2017 my neurologist went with SPS based on really high GAD65 blood test (and am being treated with Valium and baclofen). It was over 3000, when normal is 0 to 5. Does anyone else have a SPS diagnosis with normal EMG, but high GAD? I don’t suffer from the extremely painful spasms that are often attributed to SPS. I think my symptoms point more to motor neuron disease, though i’d much rather have SPS. I have mild muscle cramping. I’m not sure if I should go to John’s Hopkins or wait it out and see how it progresses.

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@hsmith801

I’ve had symptoms since early 2016. I have overwhelming stiffness that affects my back, lower legs, and feet and also have muscle weakness. I thought ALS, but had normal EMG tests. I tend to think it could be Primary Lateral Sclerosis, which affects the upper motor neurons rather than ALS (which affects both upper and lower). Often PLS can turn into ALS. PLS can also take years to diagnosis. In late 2017 my neurologist went with SPS based on really high GAD65 blood test (and am being treated with Valium and baclofen). It was over 3000, when normal is 0 to 5. Does anyone else have a SPS diagnosis with normal EMG, but high GAD? I don’t suffer from the extremely painful spasms that are often attributed to SPS. I think my symptoms point more to motor neuron disease, though i’d much rather have SPS. I have mild muscle cramping. I’m not sure if I should go to John’s Hopkins or wait it out and see how it progresses.

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I have been diagnosed with SPS based on a GAD Ab level of 1,451 (standard range at UW Lab <=0.02.!

I have been treated with Valium 5mg. b.i.d. and IVIg q4 weeks, then q6 weeks since Feb of 2016, until the shortage on Feb. 25th of 2019. I began to have more frequent spells, but did not get IVIg again until July 23rd. I am symptomatic, but only outdoor balance issues: No spasms, no pain, no muscle weakness, no problems indoors. I continue to walk 3 miles in 45 minutes with walking sticks, swim a mile in 35 minutes & / or ride a stationary recumbent bike at a THR of 110 for 45 minutes along with 1/2 hour of floor exercises, lift dumbbells, and balance exercises with special balance devices.

Who / what are you? A patient or a mentor?

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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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To @nutmeg: Your symptoms sound exactly like mine. I walk with walking sticks when I go for a walk, because I can’t do curbs, slanted surfaces, or gravel. I can motor on sidewalks, but am afraid to go without my walking sticks because of the possibility of the above obstacles.

I had a “negative “ EMG, but am questioning that answer: Twice during the procedure , my left thigh tightened to the point where I could not lift my leg. The tech and doctor were at my ankle level both times. I reported the spasm, but they ignored me both times and just continued the procedure.

I DO have an appointment at Mayo in Rochester this Wednesday, November 5th, and am very hopeful that I get a doctor who listens, is empathetic, and cares about what is happening to me.

Please reply to me. I really hope we can get help: I really want to golf, but that really throws me off balance.

From Peggy

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@peggi

I have been diagnosed with SPS based on a GAD Ab level of 1,451 (standard range at UW Lab <=0.02.!

I have been treated with Valium 5mg. b.i.d. and IVIg q4 weeks, then q6 weeks since Feb of 2016, until the shortage on Feb. 25th of 2019. I began to have more frequent spells, but did not get IVIg again until July 23rd. I am symptomatic, but only outdoor balance issues: No spasms, no pain, no muscle weakness, no problems indoors. I continue to walk 3 miles in 45 minutes with walking sticks, swim a mile in 35 minutes & / or ride a stationary recumbent bike at a THR of 110 for 45 minutes along with 1/2 hour of floor exercises, lift dumbbells, and balance exercises with special balance devices.

Who / what are you? A patient or a mentor?

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To @peggi, I'm a patient. I'm doubtful of my EMG results as well. (I see your response to @nutmeg.) Before I had the first one, the doctor told me I don't have ALS, just looking at me, not even having had a neurological exam either. Then as the test began, he appeared to look really serious. It is tough to know if he was lying to me afterwards about it being normal because he didn't want to be wrong. I've developed a lot of distrust for neurologist after this because going for second and third opinions, I believe they rely heavily on the opinions of prior doctors. The second EMG at the same practice, but a different doctor, she kept reinserting needles into my back muscles until she found a good reading!! I figure I have to wait it out and go with the only understanding neurologists I found who went with the SPS because all the others seem useless. Or else go to experts in SPS at John's Hopkins and see what they believe about a SPS diagnosis.

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@peggi

To @nutmeg: Your symptoms sound exactly like mine. I walk with walking sticks when I go for a walk, because I can’t do curbs, slanted surfaces, or gravel. I can motor on sidewalks, but am afraid to go without my walking sticks because of the possibility of the above obstacles.

I had a “negative “ EMG, but am questioning that answer: Twice during the procedure , my left thigh tightened to the point where I could not lift my leg. The tech and doctor were at my ankle level both times. I reported the spasm, but they ignored me both times and just continued the procedure.

I DO have an appointment at Mayo in Rochester this Wednesday, November 5th, and am very hopeful that I get a doctor who listens, is empathetic, and cares about what is happening to me.

Please reply to me. I really hope we can get help: I really want to golf, but that really throws me off balance.

From Peggy

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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.

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@suzanneleafbrock

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.

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Suzanne: Thank you for your reassuring response. Yes, I have heard that Mayo physicians take good care of their patients, which is why I asked for a referral.

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