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 | @pattygail | Nov 22, 2016

Judiff | @judiff | Jul 6, 2011

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:)

Suzanne Leaf-Brock | @suzanneleafbrock | Jul 6, 2011

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.