Stiff Person Syndrome

Posted by Suzanne Leaf-Brock @suzanneleafbrock, Jul 5, 2011

Am interested in connecting with people who have this or are significant others of people who have this condition. (I’m in the latter group).

Liked by mcrchicago

@lisalucier

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?

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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.

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@trs

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.

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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.

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@pollyanna777

Hi, all! My best friend has SPS and fell about 180 times during the 1st year. Head doc gave her baclofen and depacote and greatly reduced falls by 95%. BUT we found out that baclofen is highly toxic and was the reason for her experiencing terrible signs of dementia! It just toasted her brain. They cut the dose in half and now, 6 months later, she has her brain back!
What she should have received in the first place was a IVIG treatment (kind of washes the blood) and has now stopped having the spasms that made her fall. She is in a nursing home unable to walk (because she hasn't used her legs for over a year now) but will be starting physical therapy soon (as soon as stupid medicade kicks in).

STAY away from BACKOFEN!

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Sorry, I meant STAY AWAY FROM BACLOFEN!

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@trs

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.

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UNFORTUNATELY, THE COST OF Rx AND THE CANNABIS IS TOO STEEP FOR ANYONE ON MADICADE / MADICARE (INTENTIONALLY SPELLED WITH AN "A") UNLESS YOU HAVE OUTSIDE FUNDS OVER AND ABOVE THE $40 THE GOVERNMENT LETS YOU KEEP TO LIVE ON. WHAT A CROCK.

Liked by njgenevieve

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@trs

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.

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AGAIN, I URGE EVERYONE TO CHECK OUT THE STATS ON "IVIG"! PLEASE LOOK IT UP AND ASK YOUR DOC. IT IS COVERED BY MOST INSURANCE COMPANIES.

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@trs

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.

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Good evening @trs, That is a wonderful idea to keep a journal. You are so spot on about being your own teacher with cannabis. Would you please share your reason for using it. What are your spasms about? Is it your primary source of pain control? I use tincture….both 1:1 and 2:1 …one in the am and one in the afternoon and pm. Have you tried the "hold it under your tongue" method to get the tincture to work more quickly?

I am pleased with the regulatory work that has been done to ensure better product quality and consistency. I have never had much luck with gummies or edibles. They seem erratic and somewhat unpredictable. How do you use them? May you have a lovely sleep.

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@trs

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.

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@trs Just curious have you tried enzymes serrapeptidase (Biomedix Labs) and nattokinase (Drs. Best)? I had a lot of stiffness in whole regions of my body and over time it subsided. My thinking was, deposits of fibrin / other proteins may have irritated nerves. These enzymes may help get rid of these "adhesions". It worked for me. Got rid of plantar fascitis, phlebitis, and general glute stiffness. Just wondering. The counter-indication is if you are on blood thinners already or have a blood disorder. Otherwise, these might be worth a try. PM me if you want more specifics.

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@pollyanna777

AGAIN, I URGE EVERYONE TO CHECK OUT THE STATS ON "IVIG"! PLEASE LOOK IT UP AND ASK YOUR DOC. IT IS COVERED BY MOST INSURANCE COMPANIES.

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@pollyanna777, I can understand your anger and how you feel the need to "shout it out" by using all caps. Treatment is supposed to help. But when the treatment creates new problems that are toxic and unsafe, we feel betrayed. It sounds like the intravenous immunoglobulin (IVIg) provides you and your friend with new hope and that physiotherapy will be a great addition to help with her mobility.

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@artscaping

Good evening @trs, That is a wonderful idea to keep a journal. You are so spot on about being your own teacher with cannabis. Would you please share your reason for using it. What are your spasms about? Is it your primary source of pain control? I use tincture….both 1:1 and 2:1 …one in the am and one in the afternoon and pm. Have you tried the "hold it under your tongue" method to get the tincture to work more quickly?

I am pleased with the regulatory work that has been done to ensure better product quality and consistency. I have never had much luck with gummies or edibles. They seem erratic and somewhat unpredictable. How do you use them? May you have a lovely sleep.

Jump to this post

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!

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@pollyanna777

UNFORTUNATELY, THE COST OF Rx AND THE CANNABIS IS TOO STEEP FOR ANYONE ON MADICADE / MADICARE (INTENTIONALLY SPELLED WITH AN "A") UNLESS YOU HAVE OUTSIDE FUNDS OVER AND ABOVE THE $40 THE GOVERNMENT LETS YOU KEEP TO LIVE ON. WHAT A CROCK.

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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.

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@richman54660

@trs Just curious have you tried enzymes serrapeptidase (Biomedix Labs) and nattokinase (Drs. Best)? I had a lot of stiffness in whole regions of my body and over time it subsided. My thinking was, deposits of fibrin / other proteins may have irritated nerves. These enzymes may help get rid of these "adhesions". It worked for me. Got rid of plantar fascitis, phlebitis, and general glute stiffness. Just wondering. The counter-indication is if you are on blood thinners already or have a blood disorder. Otherwise, these might be worth a try. PM me if you want more specifics.

Jump to this post

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.

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@trs

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!

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@trs, Thank you for sharing your medical cannabis protocol. I used to put the tincture in my coffee. Now I hold it under my tongue so it can get to work sooner. I am very interested in your Agave syrup. Are you letting the Agave take the place of the coconut oil, etc. that combines with the cannabis in the dispensary bottle? Or are you adding to the tincture while keeping
the ratio at 1:1.? If you can, from what I have written, HELP.

I understand the Valium PRN……I did that the very same way when I was in pain prison….and especially for traveling when I knew I had a difficult meeting at 9:00 a.m. Now, with just a 2:1 and some gabapentin to quiet the hands, I can sleep on past the 5:30 am "burn" or "zaps" that I used to face. Retirement helps.

One more request…..if the SPS spasms are the most debilitating, do you use this same cannabis program or with something extra?

It sounds like we are both fighting the fight. If you can, please respond. I will be looking forward to your article. Find relief today. Chris

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@msdee004

Hi Martha my name is Darlene, I live in Tampa, FL and I was diagnosed with SPS in August 2011 by my wonderful doctor, Theresa Zesiewicz (a neurologist at USF) 813-974-5909. I was referred to her by my son neurologist for Ataxia (a degenerative nerve disorder) similar to MS. Yes I have a double whammy. Ataxia/SCA5 & SPS! Dr.Z (what she is often called) did a thorough examination on me for Ataxia, and she noticed my gait so she said that she wanted to test me for SPS. And her notion was correct the test came back positive for SPS.
Dr. Z put me on IVIg treatment for about 2 years and it really helped me, but I had an allergic reaction to it so she stopped it. So she went to work looking for me something else that would help me and she came up to Plasmapheresis. I get it every 3 months at TGH where I'm hospitalized for 10 days Bcas I receive the treatment once every other day for 5 days. And let me tell you that it really helps it gives me a boost of energy!

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Hi there, my name is Genevieve, just moved from NJ to GA with recent Dx of SPS. I’m curious if the Plasmapheresis is continuing to help your symptoms?

Liked by Lisa Lucier

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@njgenevieve

Hi there, my name is Genevieve, just moved from NJ to GA with recent Dx of SPS. I’m curious if the Plasmapheresis is continuing to help your symptoms?

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Hi, @njgenevieve – Hoping that @msdee004 will return with a report on the plasmapheresis and how it has gone.

You talked about feeling as though you were bounced around a bit between doctors previously. Do you now have a new neurologist since your move to GA?

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I was diagnosed with SPS in 2015 and would love to compare notes.

Liked by Lisa Lucier

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