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.

@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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Hello @bjm5501, Welcome to Connect. You may find this discussion with @pattygail @sandra319 and @hammere4 helpful – Stiff Person Syndrome https://connect.mayoclinic.org/discussion/stiff-person-syndrom/

Here is another patient story that you may find helpful — Sharing Mayo Clinic: Diagnosed with stiff-person syndrome:
https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-diagnosed-with-stiff-person-syndrome/

Has your doctor suggested any physical therapy for you?

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@johnbishop

Hello @bjm5501, Welcome to Connect. You may find this discussion with @pattygail @sandra319 and @hammere4 helpful – Stiff Person Syndrome https://connect.mayoclinic.org/discussion/stiff-person-syndrom/

Here is another patient story that you may find helpful — Sharing Mayo Clinic: Diagnosed with stiff-person syndrome:
https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-diagnosed-with-stiff-person-syndrome/

Has your doctor suggested any physical therapy for you?

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I am scheduled for PT next week. Maybe some stretching exercises can relieve this pain,

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@mcrchicago

A dear friend was just diagnosed. I would be interested in hearing from others.

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Constant pain in neck, spine and shoulders…effects mobility and quality of life….nothing helps my pain but muscle relaxers that make me sleepy….😑😔

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@southerncharm

Constant pain in neck, spine and shoulders…effects mobility and quality of life….nothing helps my pain but muscle relaxers that make me sleepy….😑😔

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I have a similar problem. I have a rare neurological disorder HNPP and it effects my muscles and nerves. But now I’m dealing with neck shoulder and upper muscle pain which my neurologist doesn’t think it’s from my condition. So he is ordering more genetic testing.
There are times I can’t even move the muscle pain is almost paralyzing. So I would suggest you speak with your doctor about getting genetic testing otherwise you will be going around in circles. I’ve tried everything and nothing releases the pain!

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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….🥴

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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!

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@upartist

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!

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@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!

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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.

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@upartist

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.

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

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@rivermaya34

@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!

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

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@southerncharm

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….🥴

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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.

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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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