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.

@krb65

I have a daughter who was diagnosed with SPS in 3/2019 but went undiagnosed for several years before that. She had a spasm episode lasting for several hours on 11/18/2021 that ended up with her being hospitalized and intubated. This is the first time this happened to her. Usually extra Clonidine stopped the spasms when they became severe. She got a tracheostomy after 2 1/2 weeks on a vent and currently continues with a tracheostomy with oxygen supplementation over the trach tube. She is able to talk with trach and is just starting to take in some nutrition via mouth (soft foods). She needs to go to an acute care rehab facility to help regain her functioning. Unfortunately she has received IVIG treatments every 3 weeks for 2 days since dx and every rehab facility she has been referred to in NY, NJ and PA has turned her down due to this treatment which is vital to her.

MY question is do you know of any rehab facilities which will take someone on IVIG treatments? If not do you have any suggestions as to what we can do to help her. She is getting minimal OT, PT and speech in the hospital and has been virtually laying in a bed since 11/18. She is only 36 years old.

If you have any suggestions I would appreciate it.

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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.

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@franksgirl210

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.

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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.

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@krb65

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.

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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.

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@franksgirl210

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.

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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

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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.

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@bjm5501

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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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.

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@pattygail

Dose any one have sps that can give some info

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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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@pattygail

Dose any one have sps that can give some info

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

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@bsnodgrass

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

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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?

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@bsnodgrass

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

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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.

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