Stiff Person Syndrome

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).

Liked by mcrchicago

@mrsbv

Hello. Can anyone tell me if there is a list of U.S. Neurologist Specialist and Neuromuscular Specialist for the U.S. Thank you.

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Hello @johnbishop, thank you so much! My insomnia kept me up all night and fortunately, I was able to navigate a bit. I was dx with SPS in 11/2009. I had to retire officially in 11/2011 (I was a Supervisor for the Federal Court and the Courtroom Deputy to our Magistrate Judge). A public SPS group opened 6/2012. Within a few months, I was asked to be an Admin. I was not well, but wanted to keep up my computer skills, just in case a miracle comes up. It's been a Volunteer Advocate since 2012. We have almost 2250 members. I have been networking with Advocacy Organizations. This year I created a project list and I've been researching PubMed, videos; basically, almost everything that would help our new members. I have been working like crazy. I thank you so much. I just received her notification. I looked up the wrong pages. I will get into those groups and connect with that group. You are a blessing. Thank you so much! You just made my day! Have a wonderful day! 🙂

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Hello. Can anyone tell me if there is a list of U.S. Neurologist Specialist and Neuromuscular Specialist for the U.S. Thank you.

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Hi @mrsbv you may have noticed I moved your post to this existing discussion on stiff person syndrome, per @johnbishop's suggestion, so that you can connect with others with similar experience.

I wanted to thank John for responding and sharing the website where you may be able to find a specialist.

Thank you for sharing your story. How are you symptoms nowadays?

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Hello, I was sent a link to this thread, in a reply to another thread on undiagnosed autoimmune disorders. Until today, I’ve never heard of SPS, but so many of my symptoms are stop on with what’s been mentioned above. When I Googled for SPS, the site I found said muscle spasms (some bad enough to break bones) are a primary symptom. I definitely don’t have that, other than some muscle twitching every few days. If any of the previous posters happen to read this, will yo please tell me if you or your loved one with SPS has this type of muscle spasms. Without that element, I have the chronic daily pain, balance and anzxiety issues, etc, that I’ve read above. Thank you. Bryan.

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I was duagnosed3 years ago. Have been on Ivig I fusion of gammagard for 2 years. The doctors think I've had this for 12 plus years. Any questions just ask.

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It's a tough condition. Has IVIG helped?

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@suzanneleafbrock

It's a tough condition. Has IVIG helped?

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I've been on IVIG for 2 years and they have slowed progression to an extent. Have discussed other options at the last appointment.

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@awinkler73

I've been on IVIG for 2 years and they have slowed progression to an extent. Have discussed other options at the last appointment.

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The this g you have to remember with this disease is that everyone is different. One treatment may work for me but may not work for you or whoever. The medication is one of the keys. Valium is a common med but it is not a long lasting drug so you end up taking it more often than normal and become addicted. Clonozapam lasts longer so it isn't as dangerous in that aspect. Gabapentin is another along with baclofen. I also take immuran

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@bryan_in_dallas

Hello, I was sent a link to this thread, in a reply to another thread on undiagnosed autoimmune disorders. Until today, I’ve never heard of SPS, but so many of my symptoms are stop on with what’s been mentioned above. When I Googled for SPS, the site I found said muscle spasms (some bad enough to break bones) are a primary symptom. I definitely don’t have that, other than some muscle twitching every few days. If any of the previous posters happen to read this, will yo please tell me if you or your loved one with SPS has this type of muscle spasms. Without that element, I have the chronic daily pain, balance and anzxiety issues, etc, that I’ve read above. Thank you. Bryan.

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Hi there Bryan-
I'm sorry to hear about your health issues. SPS is a member of the GAD65 antibody autoimmune disorders.(SPS, Myesthinia Gravis, Sjogren's, CIDP, etc…) Many of these disorders have overlapping symptoms. You also may have more than one disorder. There are tests to figure out which one you have and treatment is different for each. From the sounds of it, you have an autoimmune issue that involves your central nervous system. You need to find an auto immune Neurologist . These will generally be at the major University Hospitals. They will be able to determine what issue you have and treat you for it. I wish you the best!

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@sarah1000

Hi there Bryan-
I'm sorry to hear about your health issues. SPS is a member of the GAD65 antibody autoimmune disorders.(SPS, Myesthinia Gravis, Sjogren's, CIDP, etc…) Many of these disorders have overlapping symptoms. You also may have more than one disorder. There are tests to figure out which one you have and treatment is different for each. From the sounds of it, you have an autoimmune issue that involves your central nervous system. You need to find an auto immune Neurologist . These will generally be at the major University Hospitals. They will be able to determine what issue you have and treat you for it. I wish you the best!

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Hi, @sarah1000, and welcome to Mayo Clinic Connect. Appreciate your input. Do you also have stiff person syndrome?

@awinkler73 – will you share what other treatment options you and your doctor discussed at your appointment?

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@sarah1000

Hi there Bryan-
I'm sorry to hear about your health issues. SPS is a member of the GAD65 antibody autoimmune disorders.(SPS, Myesthinia Gravis, Sjogren's, CIDP, etc…) Many of these disorders have overlapping symptoms. You also may have more than one disorder. There are tests to figure out which one you have and treatment is different for each. From the sounds of it, you have an autoimmune issue that involves your central nervous system. You need to find an auto immune Neurologist . These will generally be at the major University Hospitals. They will be able to determine what issue you have and treat you for it. I wish you the best!

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Thank you Sarah!

Liked by bryan_in_dallas

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@lisalucier

Hi, @sarah1000, and welcome to Mayo Clinic Connect. Appreciate your input. Do you also have stiff person syndrome?

@awinkler73 – will you share what other treatment options you and your doctor discussed at your appointment?

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Great question. The more I read about SPS, the more I think that might be the “undiagnosed autoimmune disorder” that I wrestle with; alone with osteoarthritis. I’ve actually seem 5 different neurologists, though, and other than confirming I have peripheral neuropathy, they’ve been no help. I believe two of the neuros specialize in autoimmune disorders. So I’ve basically stopped chasing the neurological side and continued seeing my rheumatologist.

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Hi, I am new to this board. 4 years ago I was dx with SPS after more than 10 years of working with docs across specialties, to figure out what was happening to my body. As a medical professional this was very disturbing. Finally after treating me for 4 years, my pain specialist dx me with SPS. SPS was dx after ruling out everything from fibromyalgia, RA, and lupus. And my presentation was very similar to another patient who presented with SPS. I have a normal EMG, but at times, the spasms impact my whole body from neck to toes. I have learned that there are absolutely different variations of SPS. In my case, unless I intervene, with meds, the spasms are so powerful that I feel as though my bones will break. My body contorts and the painful spasms are unbearable! Over the 4 years, the spasms, rigidity, and pain have progressed in duration, frequency, and intensity. I failed valium, injections and balcofen. 3 years ago, I was very discouraged because I had exhausted all of the med options, but I refused to give up. So, I started medical cannabis as my last option. The cannabis helped slightly, but when I increased the dose to a 1:1 ratio of cbd/thc, to my surprise, it prevented the onset of the spasms! And unlike the other meds, my blood work was clean. At times while on the cannabis, I can feel them trying to set in, but they do not fully manifest! So days, I use cannabis 3-4 times. I am so thankful. Now the biggest challenge is traveling across state lines. While I have a medical cannabis card from my home state, I cannot legally take the cannabis with me if I try to vacation elsewhere. I hope my story helps.

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@trs

Hi, I am new to this board. 4 years ago I was dx with SPS after more than 10 years of working with docs across specialties, to figure out what was happening to my body. As a medical professional this was very disturbing. Finally after treating me for 4 years, my pain specialist dx me with SPS. SPS was dx after ruling out everything from fibromyalgia, RA, and lupus. And my presentation was very similar to another patient who presented with SPS. I have a normal EMG, but at times, the spasms impact my whole body from neck to toes. I have learned that there are absolutely different variations of SPS. In my case, unless I intervene, with meds, the spasms are so powerful that I feel as though my bones will break. My body contorts and the painful spasms are unbearable! Over the 4 years, the spasms, rigidity, and pain have progressed in duration, frequency, and intensity. I failed valium, injections and balcofen. 3 years ago, I was very discouraged because I had exhausted all of the med options, but I refused to give up. So, I started medical cannabis as my last option. The cannabis helped slightly, but when I increased the dose to a 1:1 ratio of cbd/thc, to my surprise, it prevented the onset of the spasms! And unlike the other meds, my blood work was clean. At times while on the cannabis, I can feel them trying to set in, but they do not fully manifest! So days, I use cannabis 3-4 times. I am so thankful. Now the biggest challenge is traveling across state lines. While I have a medical cannabis card from my home state, I cannot legally take the cannabis with me if I try to vacation elsewhere. I hope my story helps.

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Hi, @trs – welcome to Mayo Clinic Connect. The spasms you describe sound almost unbearable. I'm glad you've found some relief.

Was your doctor the one who suggested the medical cannabis, or how did you decide to try that route?

@bryan_in_dallas – what treatment avenues are your rheumatologist having your pursue for SPS?

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@bryan_in_dallas

Great question. The more I read about SPS, the more I think that might be the “undiagnosed autoimmune disorder” that I wrestle with; alone with osteoarthritis. I’ve actually seem 5 different neurologists, though, and other than confirming I have peripheral neuropathy, they’ve been no help. I believe two of the neuros specialize in autoimmune disorders. So I’ve basically stopped chasing the neurological side and continued seeing my rheumatologist.

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Hi, all! My best friend has SPS and fell about 180 times during the 1st year. Head doc gave her baclofen and depacote and greatly reduced falls by 95%. BUT we found out that baclofen is highly toxic and was the reason for her experiencing terrible signs of dementia! It just toasted her brain. They cut the dose in half and now, 6 months later, she has her brain back!
What she should have received in the first place was a IVIG treatment (kind of washes the blood) and has now stopped having the spasms that made her fall. She is in a nursing home unable to walk (because she hasn't used her legs for over a year now) but will be starting physical therapy soon (as soon as stupid medicade kicks in).

STAY away from BACKOFEN!

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