Stiff Person Syndrome: Want to connect with others

Hi, @trs - welcome to Mayo Clinic Connect. The spasms you describe sound almost unbearable. I'm glad you've found some relief.

Was your doctor the one who suggested the medical cannabis, or how did you decide to try that route?

@bryan_in_dallas - what treatment avenues are your rheumatologist having your pursue for SPS?

Hi, I am new to this board. 4 years ago I was dx with SPS after more than 10 years of working with docs across specialties, to figure out what was happening to my body. As a medical professional this was very disturbing. Finally after treating me for 4 years, my pain specialist dx me with SPS. SPS was dx after ruling out everything from fibromyalgia, RA, and lupus. And my presentation was very similar to another patient who presented with SPS. I have a normal EMG, but at times, the spasms impact my whole body from neck to toes. I have learned that there are absolutely different variations of SPS. In my case, unless I intervene, with meds, the spasms are so powerful that I feel as though my bones will break. My body contorts and the painful spasms are unbearable! Over the 4 years, the spasms, rigidity, and pain have progressed in duration, frequency, and intensity. I failed valium, injections and balcofen. 3 years ago, I was very discouraged because I had exhausted all of the med options, but I refused to give up. So, I started medical cannabis as my last option. The cannabis helped slightly, but when I increased the dose to a 1:1 ratio of cbd/thc, to my surprise, it prevented the onset of the spasms! And unlike the other meds, my blood work was clean. At times while on the cannabis, I can feel them trying to set in, but they do not fully manifest! So days, I use cannabis 3-4 times. I am so thankful. Now the biggest challenge is traveling across state lines. While I have a medical cannabis card from my home state, I cannot legally take the cannabis with me if I try to vacation elsewhere. I hope my story helps.

Great question. The more I read about SPS, the more I think that might be the “undiagnosed autoimmune disorder” that I wrestle with; alone with osteoarthritis. I’ve actually seem 5 different neurologists, though, and other than confirming I have peripheral neuropathy, they’ve been no help. I believe two of the neuros specialize in autoimmune disorders. So I’ve basically stopped chasing the neurological side and continued seeing my rheumatologist.

Thank you Sarah!

Hi, @sarah1000, and welcome to Mayo Clinic Connect. Appreciate your input. Do you also have stiff person syndrome?

@awinkler73 - will you share what other treatment options you and your doctor discussed at your appointment?

Hi there Bryan-
I'm sorry to hear about your health issues. SPS is a member of the GAD65 antibody autoimmune disorders.(SPS, Myesthinia Gravis, Sjogren's, CIDP, etc...) Many of these disorders have overlapping symptoms. You also may have more than one disorder. There are tests to figure out which one you have and treatment is different for each. From the sounds of it, you have an autoimmune issue that involves your central nervous system. You need to find an auto immune Neurologist . These will generally be at the major University Hospitals. They will be able to determine what issue you have and treat you for it. I wish you the best!

The this g you have to remember with this disease is that everyone is different. One treatment may work for me but may not work for you or whoever. The medication is one of the keys. Valium is a common med but it is not a long lasting drug so you end up taking it more often than normal and become addicted. Clonozapam lasts longer so it isn't as dangerous in that aspect. Gabapentin is another along with baclofen. I also take immuran

I've been on IVIG for 2 years and they have slowed progression to an extent. Have discussed other options at the last appointment.

It's a tough condition. Has IVIG helped?

I was duagnosed3 years ago. Have been on Ivig I fusion of gammagard for 2 years. The doctors think I've had this for 12 plus years. Any questions just ask.