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 Support Group.

@pattygail

<p>Dose any one have sps that can give some info</p>

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Best wishes to you

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@pattygail

<p>Dose any one have sps that can give some info</p>

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yes it was with the blood test and spinal tap I have been diagnosed for about 7years

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@pattygail

<p>Dose any one have sps that can give some info</p>

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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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@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

<p>Dose any one have sps that can give some info</p>

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

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@pattygail

<p>Dose any one have sps that can give some info</p>

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

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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

<p>Dose any one have sps that can give some info</p>

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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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@pattygail

<p>Dose any one have sps that can give some info</p>

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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

<p>Dose any one have sps that can give some info</p>

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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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