Stiff Person Syndrome: Want to connect with others

Prior to and during initial diagnosis, my anxiety was unbelievably bad. The pain from the spasms was unbearable and draining. I had a serious startle response that made me jumpy and scared. I had to leave my job, couldn’t take care of myself, couldn’t drive and dealt with constant pain. It absolutely changed my personality. I was struggling with grief over my old life and the inability to control my body. It wasn’t until I was on multiple oral meds and IVIg that these symptoms were under better control. I know being a caretaker of someone with SPS is a challenge. I can only imagine the mixed emotions you are also feeling. Empathy and patience are key. I do know some patients with SPS that are able to take ADHD meds that do not exacerbate SPS. I cannot speak to which meds they take. Some ideas…individual therapy, couples therapy, EMDR therapy, sauna and massage dates. Low stress activities that allow the brain to be distracted can help SPS. I hope this helps!

@cortneykaybenson Gee, stiff person syndrome is a tough one. Is your husband on any medications? Antidepressants? Imagine what must go through his mind!
I decided to include this information about SPS because it mentions treatment options and
https://my.clevelandclinic.org/health/diseases/6076-stiff-person-syndrome
Other educational support groups
Do you think that you could have a good discussion with your husband’s doctor?.

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 home but I cannot agree to be verbally abused for the rest of my life while I keep everything in our household running by myself.

My husband had a positive GAD65 antibody test a few weeks ago. His neuroimmunologist thinks it’s likely SPS given his other symptoms.

OMG…that is so scary and sad. May I ask why the doc does not do the IVIG trial for him. I totally agree that the disease is rare but need to try every possible method to make him feel better.

I was diagnosed with SPS IN 2020/21. Went through many tests including X-ray and MRI. My gad 65 was and is very high level. Was prescribed with Baclofen and Diazepam. Then on IVIG. Started with 3 months(twice) didn’t see improvement. Changed to every 4 weeks for 1 1/2 years. Recently we are trying on 8 weeks. I got stiff from waist down, and couldn’t move. Spasms and anxiety makes it worst. With the IVIG, very rare spasm but anxiety still there. Good days and bad days(I need support to walk).I’m in Massachusetts in my 50s. Appreciate to hear if anyone has the same symptoms.

Hi. I am a spouse of an sps patient in Ohio. There are a whole 4 people diagnosed in ohio and very few docs who have heard of disease. Mybhubs was misdiagnosed for 10 years based on his Job and age. Finally at 33 and losing feeling of his legs and looking like he was having a seizure an old school neurologist did sps panel thru Mayo clinic and it came back positive for very high levels of antiglycin antibodies, a low but positive gad 65 level, they did a spinal tap and it was negative for everything. His spasms in the last 2 years have now spread to jaw neck spine and chest muscles, he is 6ft tall and now only weighs 124# due to spasms affecting his gut. His pcp does an old school muscle relaxer, pain meds, diazapam aspirin and pantoprazole. Nothing has worked and no doc in ohio will do ivig or plasmapheresis so we deal with life every day at a time. It's affected myself and our kids. As a nurse, I have to fight with every doc we come into contact with because of how rare the disease is.

Hello, my partner was recently diagnosed with SPS and I would really appreciate having someone to talk to. I feel pretty lost and confused.

@amandayounts14 you have 2 patients with SPS?
That’s amazing since it’s so rare!

So, someone who is elderly with Alzheimer’s, and SPS will need nursing home care. I am stunned…

I wouldn't have any expectations about staying home alone. I have 2 patients with it, and they are total care. One of them has to eat pureed food by his wife and cannot drink without aspirating. Also he cannot talk. His body is rigorous. If you can get on IVIG, sooner is better than later. Good luck