Behavior changes in Stiff Person Syndrome

Posted by cortneykaybenson @cortneykaybenson, Jul 3 12:47pm

My husband is 34 and positive for GAD65 antibodies. He’s been experiencing a tremor in his arm for about a year now. Also having spasms elsewhere in his body and changes in behavior. What’s most difficult for me is his behavior. Stopped working (understandable), but is very irritable and cannot even talk to me without saying he’s too stressed. Like extreme sensitivity. I cannot live my life with someone who can’t even speak with me. He also has ADHD and isn’t taking those meds as they seem to worsen his tremors and spasms.

My main question is, has anyone else with a spouse with SPS experienced this type of extreme personality change? It is heartbreaking. I want to support him, but I cannot agree to be verbally abused for the rest of my life while I keep everything in our household running by myself. He is lashing out verbally and has never behaved this way I. The 18 years we’ve been together.

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John, Volunteer Mentor | @johnbishop | Jul 3 2:39pm

Welcome @cortneykaybenson, I can't imagine how difficult it must be for you and your husband dealing with such a rare disorder as stiff person syndrome. I saw that you had posting in another discussion here but have not had any responses yet - https://connect.mayoclinic.org/comment/1340432/. Hopefully members with some experience will see your discussion and be able to share there experience. From what I have read stiff person syndrome can have symptoms like your husbands. Here are a few articles on the topic that may offer some insight.
-- Psychiatric Symptoms in Stiff-Person Syndrome: A Systematic Review and a Report of Two Cases
https://www.sciencedirect.com/science/article/abs/pii/S2667296022003020
-- Cognitive and Mood Profiles Among Patients With Stiff Person Syndrome Spectrum Disorders
https://pmc.ncbi.nlm.nih.gov/articles/PMC9184450/.
Here's an article from Mayo Clinic by Dr. McKeon, a neurology specialist at Mayo Clinic in Rochester, Minnesota. His research interests pertain to autoimmune neurological diseases of the central nervous system, including autoimmune encephalitis, autoimmune movement disorders and stiff person syndrome.
- What is stiff person syndrome? Understanding a rare neurological disorder https://mcpress.mayoclinic.org/healthy-brain/what-is-stiff-person-syndrome-understanding-a-rare-neurological-disorder/

Is he able to discuss his ADHD medications with his doctor to see if there may be some alternatives that might work better for him?