Stiff Person Syndrome

Posted by pattygail @pattygail, Nov 22, 2016

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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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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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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Hi I wrote several months ago regarding my daughters SPS, she was hospitalized non 11/18/2021 and continues to be although has been transferred a few times to different hospitals. I believe she is in the right place now and further testing is ongoing. Has anyone been diagnosed with PERM associated with SPS? Not sure yet this is definitely where her syndrome has gone but pretty sure also trying to rule out any possible cancers.

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@krb65

Hi I wrote several months ago regarding my daughters SPS, she was hospitalized non 11/18/2021 and continues to be although has been transferred a few times to different hospitals. I believe she is in the right place now and further testing is ongoing. Has anyone been diagnosed with PERM associated with SPS? Not sure yet this is definitely where her syndrome has gone but pretty sure also trying to rule out any possible cancers.

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Hi @krb65, I know it has to be a little scary when you don't have all of the answers and you are not sure how to help. It sounds like the doctors may be making some progress in finding out more about your daughter's diagnosis and a possible treatment to help. I was not familar with PERM associated with SPS. I did a search of Connect but was not able to find a member discussing the condition. I did find a couple of articles that discuss PERM that might provide some more information for you. Hopefully other members may have some experience or information to share with you.

"SPS and PERM are associated with other autoimmune conditions including diabetes mellitus, thyroiditis, autoimmune thyroid disorders, …" — Progressive Encephalomyelitis With Rigidity and Myoclonus With Thymoma: A Case Report and Literature Review: https://www.frontiersin.org/articles/10.3389/fneur.2020.01017/full

A case report of rigidity and recurrent lower limb myoclonus: progressive encephalomyelitis rigidity and myoclonus syndrome, a chameleon — https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-018-1176-3

Do you know what kind of testing they are doing now for your daughter?

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Hi! I was diagnosed with atypical SPS in August 2019 at Penn Medicine and then received an expert opinion from Dr. Marinos Dalakas at Jefferson University Hospital. I am GAD negative, which made the diagnosis a bit confusing at first. I am a 40-year old woman living in NJ and am disabled. I am here to talk if anyone wants to.

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