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Posts (6)

Sep 21, 2019 · Stiff Person Syndrome in Brain & Nervous System

No, I have not. For now, I am in a good space. Unless something comes along that does not produce side effects more problematic than SPS, I plan to stay with my regiment.

Sep 21, 2019 · Stiff Person Syndrome in Brain & Nervous System

You are correct regarding the cost. And you can only pay the dispensary in cash! However, I am working with others to change this. Beginning in Jan 2020 my home state of Illinois will allow medical cannabis patients to grow a few plants.

Sep 21, 2019 · Stiff Person Syndrome in Brain & Nervous System

Hi Chris,
I use medical cannabis to help with stiffness, pain and spasms. SPS spasms in my case are the most debilitating. Prior to turning to medical cannabis, I had exhausted medication including epidurals, balcofen and many others. I had to experiment with different products, doses and method of use. It required me to journal daily. 2:1 ratio does not seem to work for me. However, the gummies, vape, chocolates and my home made tincture (I mix the medical cannabis is Agave syrup) and use it in my hot beverages or take a tablespoon before I retire to bed. Also, adding the 1:1 rso in the Agave cuts way down on my cost. One bottle last about 2 months depending on my symptoms. The capsules do not work for me. I try to stay with the same company and Iow experiment ounif the product is not available. Remember, all cannabis is not the same. More specifically, different medical cannabis company's products will produce a different impact, even if it's a 1:1 ratio of the THC/CBD. And no one seems to know why. You find what works for you and stay with it. I am good with exploring, because just like differences within medical cannabis, so are there differences with SPS. And medical cannabis is safer😁 My focus is on doing everything, everyday that I can to function at my best. So I fight! Hopefully, I will write an article this winter on my experience. I am on Valium PRN, but unless I travel out of state, I never use it. Thank God!

Sep 17, 2019 · Stiff Person Syndrome in Brain & Nervous System

It took about 2-3 months to find the right dose of cannabis. Everyone responds differently, so if you decide to go this route, work with the dispensary, keep a journal of what you are using, the route (vape, gummies, etc), how often and the dose. You have to experiment and find what works for you. If I need immediate relief (10-15 mins) I vape, to get me through the night I use gummies or tincture. The gummies and tincture take about 45 mins to work, but the impact last about 6-7 hours. Again this is my situation. The 1:1 ratio of THC and CBD is the only combination that relieves and prevents my spasms.

Sep 17, 2019 · Stiff Person Syndrome in Brain & Nervous System

I am a healthcare professional and in consultation with my pain specialist and primary care doc, it was the only remaining option. Baclofen and other drugs created unsafe side effects and the spasms we're still breaking through. My rheumatologist is no longer involved. She tried everything, except bio-stuff. I am extremely grateful that cannabis is available in my home state of Illinois.

Sep 7, 2019 · Stiff Person Syndrome in Brain & Nervous System

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.