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.

@speechless623

I thought SPS was diagnosed more by observation? I had GAD 65 test and results were high so since I do not have Diabetes, my neurologist ordered Lumbar Puncture so he could see the source of Ataxia. A Resident did the Lumbar Puncture but told me he got no spinal fluid (I am overweight and I am told that I must have Lumbar Puncture redone under Guided Fluoroscopy – that is where I am now). I have been diagnosed with Spinal-Cerebellar Ataxia – my doctor is looking for the source of the Ataxia. I have SPS as well. My doctor wants me to have IVEG after he examines my spinal fluid (after successful Lumbar Puncture under Guided Fluoroscopy).

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@speechless623 – Here is some information on how stiff person syndrome is diagnosed.

Excerpt from linked page… "A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain." – Stiff-Person Syndrome Information Page | NIH: https://www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page

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@pattygail

Dose any one have sps that can give some info

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John – Thank you very much for this information. My Doctor did GADS 65 test on me, results were high so he wants to do Lumbar Puncture so he can have Spinal Fluid tested to see where the Ataxia is coming from. Then he wants me to have IVEG. Do you have information on IVEG (safety, effectiveness-anything I should know)?

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@speechless623

John – Thank you very much for this information. My Doctor did GADS 65 test on me, results were high so he wants to do Lumbar Puncture so he can have Spinal Fluid tested to see where the Ataxia is coming from. Then he wants me to have IVEG. Do you have information on IVEG (safety, effectiveness-anything I should know)?

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@speechless623 – I have no experience with IVIG treatment for stiff person syndrome but here are a few articles you might find helpful.

– "Most adverse effects are mild and transient including headaches, flushing, fever, chills, fatigue, nausea, diarrhea, blood pressure changes and tachycardia." – Safety of intravenous immunoglobulin (IVIG) therapy: https://pubmed.ncbi.nlm.nih.gov/17317619/

– (2019) New Thinking on Stiff Person Syndrome — Or Is It Syndromes?: https://www.medpagetoday.com/meetingcoverage/aan/79664

– "Dec 22, 2015 — Stiff Person Syndrome (SPS) is one of the rarest autoimmune … IVIG and plasmapheresis are either used alone or in combination in refractory …" – Recent Advances and Review on Treatment of Stiff Person Syndrome in Adults and Pediatric Patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727915/

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@pattygail

Dose any one have sps that can give some info

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I was diagnosed with stiff person syndrome back on 2010 . after many visits with different specialists and being misdiagnosed with ankelosing spondylites
and being treated for about a year for this condition, I had I flare up . then the treatment stop working . and when I ask the reumatologist how to prevent the falls that i was and still experiencing . she realized that i had other condition since, people suffering of spondylits do not fall. So I start again the process on finding out what was wrong with me. I was referred to a neurologist but after many MRIs and other studies he could not figure out what the problem was
He referred me to UCSF they did a blood test that was sent to the Minesota Mayo Clinic for the diagnosis. as of this day i havent received any treatment just valium which is not helping me and my condition seams to be progressing .I believe I have being able to manage the condition by being positive and keeping active working out regularly
Whaay Im seeking now is to find something else to help me with the stiffness and if posssible stop the progression of the disease

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@estelatorres

I was diagnosed with stiff person syndrome back on 2010 . after many visits with different specialists and being misdiagnosed with ankelosing spondylites
and being treated for about a year for this condition, I had I flare up . then the treatment stop working . and when I ask the reumatologist how to prevent the falls that i was and still experiencing . she realized that i had other condition since, people suffering of spondylits do not fall. So I start again the process on finding out what was wrong with me. I was referred to a neurologist but after many MRIs and other studies he could not figure out what the problem was
He referred me to UCSF they did a blood test that was sent to the Minesota Mayo Clinic for the diagnosis. as of this day i havent received any treatment just valium which is not helping me and my condition seams to be progressing .I believe I have being able to manage the condition by being positive and keeping active working out regularly
Whaay Im seeking now is to find something else to help me with the stiffness and if posssible stop the progression of the disease

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Hello @estelatorres and welcome to Mayo Clinic Connect. I understand that you have been diagnosed with SPS and are interested in finding some new ways of possibly stopping the progression of the disease.

I found this older discussion from within the community on this same topic that I want to share with you so you can review the member experiences and also the resources shared as a starting point.

-Stiff Person Syndrome:
https://connect.mayoclinic.org/discussion/stiff-person-syndrom/
Members who were present on that discussion include @mandymcintyre @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4 who have all discussed their diagnosis or that of a family member.

While we wait for other members to join, what do you do primarily to keep active and for workouts that you feel has been most beneficial so far?

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@pattygail

Dose any one have sps that can give some info

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Hello fellow members. I have recently been diagnosed with Stiff Person Syndrome. Anyone else get brain fog and your face hurts? And what are the best tips for living with it? Massage therapy help? PT and OT helpful? Thanks.

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@pattygail

Dose any one have sps that can give some info

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Hello @bdaniels7 and welcome to Mayo Clinic Connect. I understand you are interested in connecting with others who have SPS to find out if they get brain fog and if their face hurts, along with best tips for living with it.

You will notice that I have moved your post into an existing discussion on SPS in order to allow you to connect with members like @speechless623 @maliakajeme @estelatorres @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4 who may be able to provide you some information based on their personal experiences.

Of your symptoms so far, which has been the most challenging?

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@pattygail

Dose any one have sps that can give some info

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I have found I am somewhat better if I do keep as active as possible. I do ordinary household chores, ride my recombent bike and I mow my lawn and work on my garden – weather permitting. I have found I get worse if I am not as active as I can be. I certainly cannot do as much as I did before I regressed. I do not have face pain or brain fog – I have very stiff posture and my feet shuffle as I haultingly walk, and my balance is very poor – I have to use a cane if I walk a long distance to keep from falling. I pray for Jesus to help me and He does, I don't know what I would do without Jesus – He is my strength and ever present help in time of trouble.

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@pattygail

I also do Nero Feedback and it helps with pain

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I find your comment encouraging. While I do not suffer from physical pain, my bipolar keeps me full of internal pain because of the pain that I cause my best friend in life, my wife. It’s absolutely never intentional but it’s kind of like not intentionally running someone over with your car… it was an accident but they are hurt nonetheless.

I feel like I am clutching at straws here but I will literally try anything at this point.

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@gary1316

I find your comment encouraging. While I do not suffer from physical pain, my bipolar keeps me full of internal pain because of the pain that I cause my best friend in life, my wife. It’s absolutely never intentional but it’s kind of like not intentionally running someone over with your car… it was an accident but they are hurt nonetheless.

I feel like I am clutching at straws here but I will literally try anything at this point.

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@gary1316 I thought I would invite you to join the Mental Health Group if you'd like to connect with other members on the topic of Bipolar Depression since you shared how much pain it causes you. Please join the group if you are interested: https://connect.mayoclinic.org/group/mental-health/

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@gary1316

I find your comment encouraging. While I do not suffer from physical pain, my bipolar keeps me full of internal pain because of the pain that I cause my best friend in life, my wife. It’s absolutely never intentional but it’s kind of like not intentionally running someone over with your car… it was an accident but they are hurt nonetheless.

I feel like I am clutching at straws here but I will literally try anything at this point.

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my child also uses nero feedback for Adhd and cognitive disorder

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I am getting IVIG once a month and on baclofen. Has anyone used prednisone for treatment? I have ribcage, low back and side muscular pain 24/7. Baclofen doesn't seem to work to release my muscles from this awful tightness. It makes me walk like a tin man, It affects my posture and I don't move very fast.(I'm on a cane whenever I leave the house.)If anyone has had success with medications, please pass it along.

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