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Stiff Person Syndrome Update
by Gary F. Zeolla
The following article was posted October 24, 2009.
I posted the article Stiff Person Syndrome Setback on August 22, 2009. This article will update my situation in the two months since then.
The blood test my PCP ordered in August was rather extensive, but everything came back normal, except for one muscle enzyme (aldolase). He sent me to a rheumatologist. It took me a month to get an appointment. That was on September 25. The doctor said she didn’t think my stiff person syndrome (SPS) problem was a rheumatological problem, so she didn’t think she could do anything for it. But my SPS was only one of the problems I was going to see her for. As I understood it, rheumatologists are the type of doctor you’re supposed to go to for fibromyalgia, but she didn’t seem too interested in addressing that problem.
I think the problem was my telling her about the problems I have with taking medications and the problems I had when I went to physical therapy. I told her about taking Prednisone and how it didn’t help but had kept me from sleeping for the week I took it. In any case, she sent me to a neurologist and gave me a script to get a EMG./ NCV to be performed. She also gave me a script to get retested for the aldolase.
I stopped to get the blood test done on my way home, but the aldoase was normal this time. The best I can figure is it was elevated when I first had the test done since I was in the midst of a flare-up, but it was normal the second time since I wasn’t. It took a couple of weeks to get the neurologist appointment, and then I was to have another appointment with the rheumatologist the following week.
In the meantime, I had several more episodes in September of being paralyzed or partially paralyzed, and my morning stiffness was worsening to the point of barely being able to move every morning and taking a couple of hours to loosen up. Plus, my various injuries simply were not healing (see Hamstring injury, again and Left Pec Injury). Needless to say, this was all extremely upsetting and hard to deal with emotionally.
I tried to figure out why this was all happening. The only thing I could think of was I had stopped supplementing with glutamine. Glutamine is the most abundant amino acid in muscle tissue, so it made sense not taking it might be contributing to my injuries no healing, and there is involvement of glutamine in SPS. As I understand it, SPS can be caused by an auto-immune reaction against glutamine. I had undergone a long series of NAET treatments in 2002, including being treated for glutamine. In fact, glutamine was one the few items I had to be treated for twice for it to fully “clear.” The NAET practitioner then recommended I supplement with glutamine to bring my levels back up to normal, and I had been doing so ever since. I even mention in my powerlifting book about taking five grams post-workout and that my training always seemed to go better when I was using it.
But shortly after that book was published in the spring of this year, I stopped taking the glutamine as I was having problems with it. Specifically, I was having problems sleeping when I took it and was getting constipated from it. Actually, I had been having these problems on occasion for the past year or so, and thus I had only been using glutamine on an irregular basis. The best I could figure it, I became sensitive to glutamine after taking it for so long and from tying to take too much of it. In the spring of last year I tried taking more of it on the “if a little is good more is better” attitude. That was a big mistake as it was then that I began to have problems from it. In fact, I had stopped taking it about a month before my powerlifting contest in June of 2008. A couple of weeks later I had suffered an infected finger that almost kept me from entering that contest. I have been wondering since then if not using glutamine had contributed to that infection as one of the reported benefits of glutamine is strengthening of the immune system. In any case, what I did was to have my dad perform a home NAET treatment for glutamine on me on October 3. My dad had gone to one of my NAET appointments years before just so the doctor could teach him how to do the home treatments. Then the day after that home treatment I began supplementing with glutamine again.
At this time, I was reading the book Sports Nutrition by Anita Bean. In it she recommends taking post-workout 100 mg of glutamine per kilogram of bodyweight (pp.73,74). I weigh about 54 kg, so that would be 5.4 grams, so I began taking about that amount post-workout. In a matter of days, my morning stiffness improved and continued to do so, so now I am only mildly stiff in the mornings and that only lasts a few minutes. Moreover, I have not had a flare-up of being paralyzed in the four weeks since then. Plus, my injuries have all greatly improved. The only change I have made is the glutamine treatment and supplementation, so I will definitely continue with the glutamine, but only the above recommended amount and only post-workout, or four times a week. Hopefully, I won’t become sensitive to it if I stick to just that intake.
By the time of the neurologist appointment on October 14 I was doings considerably better as far as my stiffness goes. The doctor performed the “normal” neurological exam that I have had done many times before for other problems, but everything seemed to be normal. He (or more correctly his assistant) then performed the EMG/ NCV. Let me warn you, if a doctor ever orders this test, refuse it if at all possible! It was the most painful medical treatment I ever underwent. I was “shocked” with what looked like small taser numerous times on my left arm and leg. My arm or leg would “jump” every time. But what was weird was when she shocked my left leg, it was my right leg that would jump.
The doctor then began to insert needles in my muscles for some more shocking. But after a couple of tests on my arm, the machine broke! They tried to fix it for about half an hour, but were unable to do so. They told me I would have to come back for the rest of the test, but everything had come back normal to that point. Moreover, the gel they were using on the electrodes was causing me problems allergy-wise, as was the disinfectant they were using before inserting the needles, so there was no way I was going to come back for more “torture.”
With every test coming up normal, the neurologist declared that he didn’t *see* that I had SPS. I emphasis “see” as he said if he didn’t see it he wouldn’t believe it. That really upset me. No I wasn’t stiff at that moment, but that is exactly why I had my dad take me to my PCP back in August when I was virtually paralyzed just so a doctor could see me in that state and know I wasn’t making it up. But this idiot doctor wouldn’t take the other doctor’s word for it. As it was, the best the neurologist could recommend was taking valium, but what for I wasn’t clear on and wasn’t about to do given the many problems I remember my mom having with valium when she took it many years ago. The neurologist didn’t even mention about making another appointment, so the whole painful experience had been a total waste of time.
My next appointment with the rheumatologist was to be on October 23, I debated about canceling it as she had already basically told me she couldn’t help me. Then the day before my car “died!” I have had problems with my car not starting all year, but this time I couldn’t even jump-start it, so I had to call a local garage to come and get it. As I write this, my car is still in the shop. With no transportation, I had no choice but to cancel the rheumatologist appointment, and given that it would probably been a waste of time anyway, I didn’t bother re-scheduling.
As of this writing, I am doing much better as far as my SPS goes. Again, the morning stiffness has much improved, and I have not had a flare-up of being paralyzed in over a month. I thank the LORD for this and can only pray that the glutamine was the key in dealing with it and that by continuing to supplement with glutamine I don’t have another setback. If that is the case, then this will be my last update as far as my SPS goes.
My other health problems continue unabated, but at least with my injuries
doing better I am able to work out with greater intensity, and that helps me
deal emotionally with the other problems. I have always found that “attacking”
the weights is a great way to take out my frustrations. Prayer of course also
It is now April 2010. Since I wrote the above, I have had periodic flare-ups of being paralyzed, so I wasn't as completely over the problem as I thought. Some of these flare-ups have come as a result of being injured while working out, while others have been after allergen exposure or from being run down. See Medication Reviews/ Psychiatrist Experiences for another update.
It is now February 2, 2015. I am still having problems with stiffness in the mornings and even during the day, but thank God I have not had a flare-up of being completely paralyzed in some time. However, my allergies have progressed to the point of being best described as multiple chemical sensitivities. This is causing me to live an isolated life and other serious problems. It is obvious at this point that the NAET treatments were a gigantic mistake. As such, I do NOT recommend them for any reason. See the article Dangers of Applied Kinesiology and NAET for details. But here I will say I wish I had never undergone the NAET treatments. I would have been much better in the long run if I hadn't. But as it is, and as a result of those problems and others, my health and thus emotional spiritual states continued to decline after the above updates. It got to the point where I was a physical, emotional, and spiritual wreck.
But in the fall of 2013, things began to turn around. I discuss the reasons for this turnaround in my articles Regaining Muscular Bodyweight and Strength posted on this site and Steps to Being Emotionally and Spiritually Uplifted posted on my Christian Web site. I am still struggling, but with much leaning upon the LORD, I am doing much better than I was. I am even planning on entering a powerlifting contest for the first time in six years. But I have had many problems while training to do so, including the stiffness hindering my training, so I am still not completely over the effects of SPS.
Disclaimer: The material presented in this article is intended for educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, exercise, or health improvement program, one should consult your doctor. The author is in no way responsible or liable for any bodily harm, physical, mental, or emotional, that results from following any of the advice in this article.
Stiff Person Syndrome Update. Copyright © 2009 by Gary F. Zeolla.
The above article was posted on this Web site October 24, 2009.
The updates were added as dated.
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Stiff Person Syndrome: Dealing with Health Difficulties
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