1. < Brain & Nervous System

Stiff Person Syndrome: Want to connect with others

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).

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Moderator
Lisa Lucier, Moderator | @lisalucier | Oct 14, 2019
In reply to @peggi "What symptoms does your significant other have?" + (show)
@peggi

What symptoms does your significant other have?

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Hi, @peggi - I would like to add my welcome to Mayo Clinic Connect. Sounds like you are having some walking trouble from your stiff person syndrome and are looking for other treatment since a shortage of immunoglobulin led to discontinuance of your therapy.

Hoping that @suzanneleafbrock @trs @fivets @ndville @stiffpersonsyndrome will share about the symptoms they or their loved one has experienced and also what regimen they are on and its effects, as well as offer their support. @hopeful33250 also may have some insights.

When is your upcoming appointment with the neurologist at UW Hospital in Madison? Are you having other symptoms beyond the walking challenges?

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2 replies
peggi | @peggi | Oct 14, 2019
In reply to @trs "No, I have not. For now, I am in a good space. Unless something comes along..." + (show)
@trs

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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What is your current regimen, which appears successful?

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peggi | @peggi | Oct 13, 2019
In reply to @ndville "Hello. My sister was diagnosed with stiff persons syndrome about 4 years ago at Houston Methodist..." + (show)
@ndville

Hello. My sister was diagnosed with stiff persons syndrome about 4 years ago at Houston Methodist in Houston Texas, and it is hard to get a physician to help her. She has tremors that last for hours and will only be helped with Valium. I called John Hopkinsin Baltimore to ask for help, they said they would make an appointment to see her, let's hope that works out.. Right now she is trached because she has trouble breathing and they won't see her until she is released from therapy. We live in Louisiana in a rural area so our options are limited. I read on many sites medicinal marijuana helps allot. Praying for everybody with this disease !!

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Please keep in touch. I hope her symptoms improve so that she can go to Johns Hopkins; and then I hope Johns Hopkins can help. I have seen online that Dr. Eric Newsome actually has an SPS Clinic.

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peggi | @peggi | Oct 13, 2019

What symptoms does your significant other have?

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1 reply
peggi | @peggi | Oct 11, 2019

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

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Moderator
Lisa Lucier, Moderator | @lisalucier | Oct 7, 2019
In reply to @njgenevieve "Hi there, my name is Genevieve, just moved from NJ to GA with recent Dx of..." + (show)
@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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njgenevieve | @njgenevieve | Oct 5, 2019
In reply to @msdee004 "Hi Martha my name is Darlene, I live in Tampa, FL and I was diagnosed with..." + (show)
@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?

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1 reply
Chris, Alumni Mentor | @artscaping | Sep 22, 2019
In reply to @trs "Hi Chris, I use medical cannabis to help with stiffness, pain and spasms. SPS spasms in..." + (show)
@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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trs | @trs | Sep 21, 2019
In reply to @richman54660 "@trs Just curious have you tried enzymes serrapeptidase (Biomedix Labs) and nattokinase (Drs. Best)? I had..." + (show)
@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.

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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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1 reply
trs | @trs | Sep 21, 2019
In reply to @pollyanna777 "UNFORTUNATELY, THE COST OF Rx AND THE CANNABIS IS TOO STEEP FOR ANYONE ON MADICADE /..." + (show)
@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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