Stiff Person Syndrome: Want to connect with others

Thank you....I would like to get a referral to a geneticist or immunologist....I've been sick a while now and have been investigated for 6 yrs now.....you start to lose faith in a diagnosis when there has been so much guess work....🥴

Hello, Your symptoms sound horrible, and very frustrating because of minimal solutions. I have a question that maybe out there a bit… but have any of your Docs imaged your atlas area? Sometimes the c-1, c-2 disc can herniate, or even a cerebral herniation can occur. I don’t know much about it, but it might be worth the research. Maybe John, the moderator has some resources? Good luck. Pain is hard!

@upartist @southerncharm If your atlas is out of place, you will hate life! It can wreak all kinds of havoc ... I'm in like my 5th month of chiropractic care bc of a wreck I was in several years ago that messed up my cervical spine. I knew I had neuropathy problems, but not THAT bad just yet... good luck to you, hope you find some relief soon!

Hey Southern Charm, I have another idea for you. I have been thinking about you, because when my spasms happen they are ridiculously painful and incapacitating. I actually carry a prescription for Skelaxin. It’s a non-narcotic and does not make me sleepy nor slow the bowel. My Doc and I landed on this medication, because I never know when the spasms are coming, and I have to stay functional. Some of the spasms last for days and the skelaxin allows me to move and not trigger the return spasm. It may serve as a band aide for you, but for me it keeps me out of the ER. I hope this helps.

Thank you....never heard of this but will bring this up w/doc.... I'm willing to try anything !

Thank you....yes if the cervical is in pain, it seems to effect whole spine 😖

Also please see an infectious disease doctor. They will do every blood test possible and at least you might get some answers. That’s where I started. Good luck and don’t give up. You know your body better than any doctor.

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.

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.

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.