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Stiff Person Syndrome: Want to connect with others

Brain & Nervous System | Last Active: Apr 27 2:40pm | Replies (197)
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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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Replies to "Hi I wrote several months ago regarding my daughters SPS, she was hospitalized non 11/18/2021 and..."
John, Volunteer Mentor | @johnbishop | Mar 2, 2022

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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