I was recently watching TV, a program on Discovery Channel came on, Mystery Diagnosis. It was about a woman who they thought had MS, but there were no lesions on her MRI. They Dx her with SPS, Stiff Person Syndrome. Even though I have MS, I could relate to the locking up of joints, lower back pain, and loss of balance. Sometimes I wonder if this MS is really something else. They said her problem was all related to "antibodies." Did anyone else happen to watch this program? Just wondering.
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No, I didn't see the program, but I have heard of the syndrome. I have dystonia, which means the muscles get really stiff and I can't move them. With me, it's mostly in my neck and shoulders, to the point that I can't turn my head or look over my shoulder without really bad pain.
I don't know what the tests for that or stiff person syndrome would be. My neuro and I thought I was having spasticity at first, but it kept getting worse and didn't respond to treatment. Now I get Botox shots every three months.As far as possible without surrender, be on good terms with all persons.
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Hello Kathy Sue
They Dx her with SPS, Stiff Person Syndrome. Even though I have MS, I could relate to the locking up of joints, lower back pain, and loss of balance.
(Whereas extreme heat totally weakens my limbs, making them more limp, floppy)
Do you have severe stiffness most of the time?
Take care,
KoKoPPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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Thanks everyone.
I guess the reason it hit home for me was because, yes, I have been experiencing major muscle spasms to the point of my entire body going into a rigid, painful, twisted pretzel. I've always had spasms, but this is ridiculous. The woman on the tv show had similar trouble. I am on baclofen...taking more every day. It's the only thing that helps. Thanks you guys for chiming in to help me try to figure this out. I'm not looking for another diagnosis, I was just curious to see if anyone else experienced this feeling. Tomorrow's another day, maybe it will be better. Take care,Kathy Sue
I not only believe in Miracles....I depend on them.
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stiff person syndrome
Hi I think Im in the wrong place but I got an alert sent to me about SPS and the link was from here. I live in New Zealand, female, 51, and I have stiff person syndrome. It is very rare and usually takes years to get diagnosed. They test your blood for ANTIGADs. Ususally they are high in people with SPS but even people who test negative can get it.
It affects all your nerves in your body. A touch or a fright, loud noise or the toast popping up can set it off. You go rigid and you spsasm. Some people are worse than others. At the moment I have it in my right foot and leg. But it is a progressive disease, but every case is different.
I dont know much about MS sorry but from what I can gather it is similar. I have had IVIG infusions and they helped me immensley but other people had no luck with it. I take Diazepam and get Botox inj in my foot and leg every 3 months. I have just been approved to have Rituxian infusions and start them on monday.
There are only 2 people in New Zealand with SPS and the other lady lives down the South Island. We email and txt alot. She is alot worse off than me.
Sorry if I have wasted your time talking bout SPS but just wanted to share. Vicki
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Vicki
Hello Vicki
Thank you for coming here to MS World and sharing about your experience with SPS.
Sorry you have to deal with that though. It sounds similar to severe spasicity, but even worse, if any noise or touch can set off rigidity and spasms.
Also, it sounds like your meds/treatments are similar to those that some persons with MS use. Good luck to you with Rituxan. Hopefully you will benefit from it
Thank you for educating us on SPS. We have learned something new, and have met someone who has SPS in New Zealand Best wishes to you
Take care,
KoKoPPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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