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pattygail
@pattygail

Posts: 10
Joined: Nov 17, 2016

Stiff Person Syndrome

Posted by @pattygail, Nov 22, 2016

Dose any one have sps that can give some info

Liked by JustDoc

REPLY

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

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

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!

@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

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

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

@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?

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.

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

Best wishes to you

@sandra319

Best wishes to you

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what were some of your signs of stiff person

Dropping things stiffness tremors falling chronic pain high gad 250 plus can’t walk or sit long etc.

@sandra319

Dropping things stiffness tremors falling chronic pain high gad 250 plus can’t walk or sit long etc.

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I didn’t have tremors but had a lot of pain in my leg at night it would act like ressless leg it took about 2years before I was diagnosed with stiff person

@sandra319

Dropping things stiffness tremors falling chronic pain high gad 250 plus can’t walk or sit long etc.

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Best wishes to uou

I was diagnosed at the Mayo three years ago at 21, the truth is no one knows what causes it and every medication I’ve been prescribed doesn’t have effects for the stiffness or pain except benzos and pain killers. The disease gives you severe anxiety and depression because no one understands the feeling except the people that have it, which are few. Tramadol and Valium/clonazapam have been the best medications for me.

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