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DiscussionStiff Person Syndrome: Want to connect with others
Brain & Nervous System | Last Active: 5 days ago | Replies (197)Comment receiving replies
@JustinMcClanahan, @johnbishop, @ingritamoreno, and all...I just found your site and your messages by mistake and am so thankful. My son, diagnosed for 20+ years with Cervical Dystonia, is in excruciating nerve pain 24/7 from his neck through his back/left shoulder/left arm which if increased by touch or movement sends horrible electrical impulses throughout his entire body...just received a possible diagnosis of Stiff Person Syndrome. Please help me with information and links to find legitimate sources to help us understand this rare thing, its symptoms and any treatments. He has a Dilaudid pain pump that helps greatly, takes Baclofen which is also a big help, and some other meds for various issues, but how do we address this syndrome directly?
He saw a neurologist at the University of Florida, Gainesville, Fixel Movement Disorder Institute last year who first mentioned this diagnosis, with no follow-up due to her moving to California! We now consulted with a neurologist we found who suggested it may be a legitimate diagnosis and are awaiting his recommendations.
Help, please, with any current information and suggestions. You friends on Connect have helped me and guided me through some quite difficult years and illnesses. I'm praying you can do the same for my son and me now.
Blessings, Elizabeth
Replies to "@justinmcclanahan, @johnbishop, @ingritamoreno, and all...I just found your site and your messages by mistake and am..."
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Hi Elizabeth,
I don't know if I could be of much help because I have been recently diagnosed in April this year to be more exact and I'm also looking for more information and learning about this rare neurological disorder.
But I'm happy to share my story with you and others that are also wondering. My diagnosis was based off on a blood test called GAD65, my result was greater that 250 which is considered high. My last symptoms back in March 2023 and what made my primary care doctor suspect I had Parkinson's Disease was the way I walked, my gait was compromised so he referred me to a neurologist and she ordered the test GAD65 and it came back positive. She ruled out Parkinson's, MS or ALS looking at previous MRIs records from December last year that other doctors had ordered because I had double vision for one month.
so my symptoms now are mainly pain on the left side of my lower back, left buttock, left calf and tingling on my left foot oh! and just very recently also pain on my right forearm, of course my imbalance at walking remains and the medications that help me with the pain, tingling and walk around slowly are 10 mgs of Diazepam daily, 2 Baclofen pills a day and one gabapentin 100 mg at bedtime. Of course physical therapy twice a week too and medication for anxiety.
I live in Southern California and I do not have the means to travel to a Mayo Clinic so what I have around me will have to do for now.
The pages that I follow on Instagram are: "Bent But Not Broken" and "Stiff Persson Research Foundation", Tara Zeer and Lea Jabre have great information.
Please feel free to ask me any questions should you have any and I wish you and your son all the best.
Blessings to you too,
Ingrid