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.

how do i contact them

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@suzieflynn

how do i contact them

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@suzieflynn, If your question is how to do you contact Mayo Clinic, you can contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@johnbishop

@suzieflynn, If your question is how to do you contact Mayo Clinic, you can contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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thank you

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@suzieflynn

what meds are you taking?

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I am taking baclofen and just started diazepam this week. My insurance approved IVIG again so I am going once a month. This does slow the progression.

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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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@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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