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Suzanne Leaf-Brock (@suzanneleafbrock)

Stiff Person Syndrome

Brain & Nervous System | Last Active: Sep 15, 2020 | Replies (112)

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@trs

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.

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Replies to "Hi, I am new to this board. 4 years ago I was dx with SPS after..."

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?