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).

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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@hsmith801

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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Interesting to keep reading everyone's responses and issues. I’m one of
those that doesn’t check all h boxes, so besides knowing I have
osteoarthritis and PN. U until recently, my Rheumatologist has even living
my underlying issue an Undiagnosed Autoimmune Disorder. Now that I’ve
found the SS age I’m wondering if I should do back to the Neurologist.
I’ve been to 5, plus two “doctor sparkies” but nothing ever came of it.
The last guy even did a spinal tap.

The one major SPS symptomless that I don’t have is the severe muscle
spasms. I do have what I’d call unintentional movement. This is like when
I hold my arm u with elbow bent and forearm running horizontally, my semi
flexed muscles with twitch randomly. This is not. Cyclical thing like
tremors, it’s random, and occurring more frequently.

I’m in a real bind because i got laid off (position eliminated to reduce
overhead) as a VP from a small civil engineering firm, in June, and still
don’t have a new job. Throughout the summer, my symptoms hve gotten worse –
have to walk s;pow;y with a cane in extreme pain. At 57, I’m not ready to
retire or try to collect disability, but I feel like the cane, age, etc is
knocking me out of he running. Never been in this situation; I’ve
literally had a “real job” every day since the week after my 15th birthday.

Anyhow, sorry for the last paragraph, but it puts things in perspective.
Any thoughts on the neuro vs. rheuma part? Also, does my unintentional
movement match up to anyone else’s symptoms on this page?

Thanks and have a great day! Bryan

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@bryan_in_dallas

Interesting to keep reading everyone's responses and issues. I’m one of
those that doesn’t check all h boxes, so besides knowing I have
osteoarthritis and PN. U until recently, my Rheumatologist has even living
my underlying issue an Undiagnosed Autoimmune Disorder. Now that I’ve
found the SS age I’m wondering if I should do back to the Neurologist.
I’ve been to 5, plus two “doctor sparkies” but nothing ever came of it.
The last guy even did a spinal tap.

The one major SPS symptomless that I don’t have is the severe muscle
spasms. I do have what I’d call unintentional movement. This is like when
I hold my arm u with elbow bent and forearm running horizontally, my semi
flexed muscles with twitch randomly. This is not. Cyclical thing like
tremors, it’s random, and occurring more frequently.

I’m in a real bind because i got laid off (position eliminated to reduce
overhead) as a VP from a small civil engineering firm, in June, and still
don’t have a new job. Throughout the summer, my symptoms hve gotten worse –
have to walk s;pow;y with a cane in extreme pain. At 57, I’m not ready to
retire or try to collect disability, but I feel like the cane, age, etc is
knocking me out of he running. Never been in this situation; I’ve
literally had a “real job” every day since the week after my 15th birthday.

Anyhow, sorry for the last paragraph, but it puts things in perspective.
Any thoughts on the neuro vs. rheuma part? Also, does my unintentional
movement match up to anyone else’s symptoms on this page?

Thanks and have a great day! Bryan

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Hello Bryan, sorry about loss of job. I must stress the importance of filing for social security disability and recommend you begin the process asap. I was advised to do so by extremely reputable Rheumatologist shortly after my Dx of Fibromyalgia in 2011-2012. I was mortified. Well, after repeated untimely patient charting and absence due to dr. Appointments I was considered a liability and let go. Long story short, with continued decline, my boyfriend at the time applied for me. After years of appeals and appearing before judges in Savannah, Ga I was denied. This process is grueling and especially cruel for the disabled. I would be dead if it weren’t for my strong support system. Finally, after moving from GA to NJ with my boyfriend I obtained another lawyer and proceeded further. Fortunately, the NJ Judge overturned the GA Judge decision based on medical advisory not following medical protocol guidelines period. I must say it was eight +years of pure agony not knowing what if any future I had. I was misdiagnosed with MS, DX with SPS and Small Fiber Neuropathy the first year of moving to NJ. And of course 99.9 % of mds assumed I was crazy within minutes of meeting me. I must say they have learned a lot from me. I am my own advocate. It’s a full time job. In reference to your unintentional movement, yes, it happens to me. As a matter of fact I actually unintentionally threw my cell phone at an elderly lady in an Apple Store. Thankfully, she was not injured. My red face and damaged phone quickly departed. The worst of my symptoms I must say is being easily startled. I have come very close to causing heart attacks to those nearby when I’m startled. Afterwards, I have spasms in chest area causing breathlessness and severe fatigue. Finally, it’s imperative to rule many other Dx which mimic SPS. Elevated GAD-65 auto antibodies is definitely a significant factor to consider. I would highly recommend finding a neuro immunologist at University if possible. I was unsuccessful scheduling an appointment at all Mayo Clinic’s. Mayo Clinic advised appointments are completely booked throughout year and unable to book appointments for next year at this time. Lastly, I’m back in GA due to extremely high cost of living in NJ. I was told when I moved here that the ivig I was receiving for past year was not available. I was administered another brand which was extremely toxic to my liver. I’m now awaiting results from scans my oncologist ordered due to suspected SPS paraneoplastic kind. Due to insufficient Neurologic care in small GA town and surrounding areas I will be commuting to NJ Neurologist that never gave up on me. It’s imperative to find a trustworthy doctor that really cares, not one that just hands you prescriptions left and right. I wish you well. Let me know if I can help in any way.

Genevieve Howard-Lanier

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@hsmith801

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.

Jump to this post

I misunderstood your question. I'm not a patient at Mayo. I live near Pittsburgh and so am not close to any Mayo Clinics.

REPLY
@njgenevieve

Hello Bryan, sorry about loss of job. I must stress the importance of filing for social security disability and recommend you begin the process asap. I was advised to do so by extremely reputable Rheumatologist shortly after my Dx of Fibromyalgia in 2011-2012. I was mortified. Well, after repeated untimely patient charting and absence due to dr. Appointments I was considered a liability and let go. Long story short, with continued decline, my boyfriend at the time applied for me. After years of appeals and appearing before judges in Savannah, Ga I was denied. This process is grueling and especially cruel for the disabled. I would be dead if it weren’t for my strong support system. Finally, after moving from GA to NJ with my boyfriend I obtained another lawyer and proceeded further. Fortunately, the NJ Judge overturned the GA Judge decision based on medical advisory not following medical protocol guidelines period. I must say it was eight +years of pure agony not knowing what if any future I had. I was misdiagnosed with MS, DX with SPS and Small Fiber Neuropathy the first year of moving to NJ. And of course 99.9 % of mds assumed I was crazy within minutes of meeting me. I must say they have learned a lot from me. I am my own advocate. It’s a full time job. In reference to your unintentional movement, yes, it happens to me. As a matter of fact I actually unintentionally threw my cell phone at an elderly lady in an Apple Store. Thankfully, she was not injured. My red face and damaged phone quickly departed. The worst of my symptoms I must say is being easily startled. I have come very close to causing heart attacks to those nearby when I’m startled. Afterwards, I have spasms in chest area causing breathlessness and severe fatigue. Finally, it’s imperative to rule many other Dx which mimic SPS. Elevated GAD-65 auto antibodies is definitely a significant factor to consider. I would highly recommend finding a neuro immunologist at University if possible. I was unsuccessful scheduling an appointment at all Mayo Clinic’s. Mayo Clinic advised appointments are completely booked throughout year and unable to book appointments for next year at this time. Lastly, I’m back in GA due to extremely high cost of living in NJ. I was told when I moved here that the ivig I was receiving for past year was not available. I was administered another brand which was extremely toxic to my liver. I’m now awaiting results from scans my oncologist ordered due to suspected SPS paraneoplastic kind. Due to insufficient Neurologic care in small GA town and surrounding areas I will be commuting to NJ Neurologist that never gave up on me. It’s imperative to find a trustworthy doctor that really cares, not one that just hands you prescriptions left and right. I wish you well. Let me know if I can help in any way.

Genevieve Howard-Lanier

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Uh my gosh! I had no idea something like that could even happen. A few weeks back, I Googled to find out info on SSDI, and entered my email for future newsletters. Immediately after that, I started getting emails from a law practice out of New Jersey (I’m in Texas), who says they specialize in it. I’ve been saving, but ignoring, their emails; just assumed this can’t be that difficult. Now you’ve got me really concerned. The way I feel and the way my health has gone down hill, I honestly wouldn’t surprised if I’m dead in 8 years. So I’ve had a successful career and have paid over the max required for “full benefits” which I believe are around $2950/ month for me and half r 3/4 of that in addition for my wife and high school aged daughter. That’s not very much money in the grand scene of things. What kind of fees did the lawyers charge and how were you able to pay them? Thanks so much for the advice. I’m definitely coming to the conclusion I need to start this process ASAP. Bryan

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