Stiff Person Syndrome: Want to connect with others

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

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.

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:)

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

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!

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 ?