Stiff Person Syndrome: Want to connect with others

Hi! I currently am taking Diazepam/Valium, Gabapentin, and get IVIg treatments every 5 weeks (3 days in a row each time). I also use medical marijuana. I do my own physical therapy, exercise and stretching. I also use heating pads on my neck/back and one leg. I find heated massage guns and trigger point massage tools to be helpful with my legs. Hot tubs, steam rooms, saunas and epsom salt sensory deprivation floats are helpful. I am also part of a bi-weekly support group call a friend found for me from one of the Facebook groups.

Welcome @bsnodgrass. I moved your question about treatments and medication that help stiff person syndrome to this existing discussion:
- Stiff Person Syndrome: Want to connect with others: https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

I did this so you can connect with others with SPS like @sheeva888 @krb65 @franksgirl210 @bjm5501 @southerncharm @terlato @rivermaya34 and more. Click the link to read all the posts.

@bsnodgrass, when were you diagnoses with SPS? What treatments have you tried?

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.