Stiff Person Syndrome: Want to connect with others

Have any of you been diagnosed with Stiff Person Syndrome? If so, what treatments/medications do you use?

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.

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?

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.

My daughter takes Clonopin and baclofen as well as IVIG every 3 weeks for 2 days,this has kept her pretty stable for the last 2 years until Nov '21 when she had a crisis situation and was hospitalized been there ever since.

I have keeping up on benefits, and as of this year “Stiff Person Syndrome” with Doctor Diagnosis is automatic coverage for Social Security & Disability. I live in the state of Alabama, but this should apply everywhere.

thank you her insurance pays for it at an infusion center this is more about how a rehab center is reimbursed for the care patients receieve in their facility, the cost of the IVIG would come out of the money they receive from Medicare to cover her during her stay and it wouldn't be cost effective for them if they had to cover the IVIG treatments. It is a matter of how things are paid for in a rehab setting. Sorry this is probably confusing I know it is to me. Just wondering if anyone else ran into this same situation and how they may have solved it i.e. changing treatment modality while in rehab or awareness of a rehab that is willing to take on the cost of IVIG

Hmmm... Have you thought about reaching out to the maker of the gammaglobulin? Our neurologist has told us if we have any insurance issues (which we have in the past) that they may be able to help. It's a tough situation because of how expensive it is. Those of us who need it know what it does, though. I hope you are able to find someone who is able to help your daughter get the medicine. It may be worth a try to contact the company.

I believe it is an insurance issue with the rehab facilities, The way it has been explained to me is a rehab facility is a bundled service so all of your care costs comes out of the set payment, therefore IVIG is too expensive for the rehab to include in their cost of care, it would not be cost effective for them.

Good morning. My husband also gets IVIG for two days every three weeks for a different neurological condition. We normally have a nurse come to the house, although he has gotten it outpatient in the hospital before. Would a rehab facility allow her to be transported back to the hospital when she needs an infusion? Or, would they allow a nurse from her infusion company to come into the rehab facility? It doesn't make sense to me why they wouldn't, unless it's some type of a liability or insurance issue.