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.

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

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We tried a number of drug therapies as well as plasma exchange for my husband. Some people respond better than others to different combinations of drugs. The chronic pain has its ups and downs, I’ve come to think of it as the degree of pain that he is encountering because it is never an absence of pain. For him the plasma exchange did not help; he was to have a series of three, but it was evident it wasn’t helping after the second so we didn’t continue.

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Hi Sue – how long has your husband had SPS? Has your Neuro tried him on Diazepam and Baclofen. A lot of SPS’ers use Gabapentin for the pain. Also I’ve recently found out the if your not a diabetic you will not get much benefit from the plasma exchange. We are all different yet we are the same – SPS is funny like that.

Have you tried the Inspire Group as they have a big following for SPS there and wonderful members that offer loads of support.

Wishing you all the best in your search for answers and relief. (I have SPS)

Cheers Judiff:)

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Dose any one have sps that can give some info

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@pattygail

Dose any one have sps that can give some info

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Hello @pattygail, welcome to Mayo Connect. If you click on the magnifying glass (search) at the top of the Connect screen and type stiff person syndrome you can bring up all of the discussions/posts on the topic. @nan45, @lora, @shellwil, @twirlgirl101, @judiff are you able to provide any information on SPS for @pattygail? Here are a few sites I have found with information on the autoimmune disease:
http://www.ninds.nih.gov/disorders/stiffperson/stiffperson.htm
http://www.mayoclinic.org/search/search-results?q=stiff+person
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/neuroimmunology_and_neurological_infections/conditions/stiff_person_syndrome.html
Can you provide any more details on the information you are looking for?

John

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@pattygail

Dose any one have sps that can give some info

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I’m looking for what I can expect from sps what my life is going to be

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@pattygail

Dose any one have sps that can give some info

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Hello @pattygail, I’m hoping others with the condition will answer your question. I have found a few sites that may give you the information you are looking for. CNN had a story in 2014 on stiff person syndrome – http://www.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/. There is also a site that provides the progression and stages of SPS – http://thetinman.org/progressionandstages.html. Please don’t give up hope!

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@johnbishop

Hello @pattygail, I’m hoping others with the condition will answer your question. I have found a few sites that may give you the information you are looking for. CNN had a story in 2014 on stiff person syndrome – http://www.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/. There is also a site that provides the progression and stages of SPS – http://thetinman.org/progressionandstages.html. Please don’t give up hope!

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Thank you for the info. I found some of it interesting

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@pattygail

Dose any one have sps that can give some info

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I wanted to let you know that I do nurofeedback and it helps with pain

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@pattygail

Dose any one have sps that can give some info

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Does anyone have stiff person syndrome? If so was oy diagnosed with gad65 blood test ?

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@sandra319

Does anyone have stiff person syndrome? If so was oy diagnosed with gad65 blood test ?

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Welcome to Connect, @sandra319.
I moved your message to this existing discussion about Stiff Person Syndrome so that you could meet @pattygail. I’d also like to invite @stayfree to join us here. She was talking about GAD65 here http://mayocl.in/2lSKMjs and may have some thoughts to add.

Sandra, if you read through the past messages of this discussion, you’ll see that @johnbishop has provided a number of useful resources about SPS. When were you diagnosed? What symptoms are you experiencing?

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@pattygail

Dose any one have sps that can give some info

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I was diagnosed a few weeks ago with two gad 65 tests that were higher than 250. The doctor spoke to another who had done iag testing and that was .93 sent to Mayo Clinic now my doctor wants me to do iag testing. I have all the stiff person. Symptoms. Stiffness tripping startle easy stress sets it off. My ivig is on hold I was due to start Monday. He wants iag test done. He ordered 2 gad 65 now is waffling.

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