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Stiff Person Syndrome
by Gary F. Zeolla
This article is continued from Stiff Person Syndrome: Part One.
Standard traditional treatment for stiff person syndrome (SPS) is drugs. The most common drug used is Prednisone. And some SPS sufferers do get good results from this drug. However, it is a not a “cure” but merely provides symptomatic relief. If the drug is stopped, the symptoms will return, so it has to be continued indefinitely. I did a search on this drug to find out more about it.
Prednisone is a corticosteroid. It is an immune suppressant drug that is often used with transplant patients. It is used in that case to suppress the immune system so it doesn’t reject the new organ. In the case of SPS, it is used to suppress the immune system so it ceases to attack glutamic acid in the body. However, needless to say, suppressing the immune system can have serious consequences. You open yourself up to more easily being infected by viruses or bacteria. And recovering from the resultant cold, flu, or infection can be very difficult.
And there are other potential side effects. Short term the effects are not too bad: nausea and vomiting or conversely increased appetite and consequent weight gain, along with insomnia seems most common. But the long-term side effects can be rather severe: osteoporosis, high blood pressure, glaucoma, and cataracts. All four of these are common in my family, so these potential side effects are particularly distressing.
Various benzodiazepines are also prescribed. The side effects of these are not as severe as for Prednisone. However, benzodiazepine use can be addicting. As such, increasingly greater amounts will be needed over time, and in some cases they simply stop being effective at any dosage. And with increased dosages come increased risks. And again, the benzodiazepines only provide symptomatic relief, so they must be continued indefinitely.
Intravenous immunoglobulin therapy is also being tried, along with other immunomodulating therapies. But I haven’t been able to find out too much about such therapies and the long-term consequences.
And finally, various neurological drugs like Neurotin and Klonipin have been tried with SPS sufferers to various degrees of success. At one time I was on both of these drugs for my neurological problem. But, as indicated above, I was able to get off of these drugs through “natural” means. And I was glad I did. Although drowsiness was the only short-term side effect I experienced, such drugs are notorious for causing liver damage in the long run. So I’m really not too thrilled about the possibility of having to take them again.
So the bottom-line on traditional treatments is that drug treatments can be effective in some cases, but there are risks involved.
[February 2, 2015 Update: I want to interject here that the NAET treatments to be described proved to be a gigantic mistake. As this lengthy article continues, my struggles with the the treatments seeming to help, but then not doing so will be described. But that is only in regards to SPS. While all of this was going on, my allergies progressed to the point of being best described as multiple chemical sensitivities. That is now causing me to live an isolated life and other serious problems. So even if the NAET treatments had fully worked in regards to SPS (which they did not), I would still NOT recommend them for any reason. Note also, when I talk about the chiropractor "testing" me, I am referring to "Applied Kinesiology." I now consider this supposed diagnostic method to be utter nonsense. See the article Dangers of Applied Kinesiology and NAET for details. I will add other "updates" in brackets as need be throughout this article. These are all from February 2015].
I also came across various recommended alternative treatments. One site suggested that allergies are the cause of the stiff muscles. I assume the idea here is that allergies occur as a result of an over-active immune system. And treating the allergies and/ or avoiding allergic substances will enable the immune system to “calm down” and thus cease to wrongly attack glutamic acid as well.
I am currently undergoing NAET style allergy treatments at the office of chiropractor. I will write more about these treatments in the future. But for now I will just say that these treatments do seem to be helping my allergies. My formerly perpetually stuffy and running sinuses are now only occasionally a problem. However, I have been receiving these treatments for several months now, the very time period over which my muscles have been getting increasing stiff. [Update: This should have been a tipoff to me that the NAET treatments might actually have caused the stiffness.] I talked to the chiropractor about my diagnosis of SPS, and he believes that allergies are in fact the root of my problem. Since the NAET treatments have been helping with my congestion I will continue them and only pray they help my SPS problems as well. Incidentally, the chiropractor said that in his 32 years of practice he had only seen one previous patient with the diagnosis of SPS.
Another possible cause of SPS that I came across is heavy metal toxicity. The recommended treatment for this is various kinds of detoxification procedures. I have undergone a detox diet twice before under the direction of a chiropractor, so that should have eliminated any possible toxins in my body. However, the place where I am living was painted in the spring, around the time the problem the stiffness began, so I began wondering if there might be a connection.
I took a sample of the paint that was used to the chiropractor, and sure enough, he said I was allergic to it. He said the paint on the walls is no longer a problem as it’s long since dried and there is “out-gassing” from new paint for only a week or two. However, he said I have paint inside of me from when the painting was done. He didn’t suggest any kind of detox to remove it. Instead, he gave me an allergy treatment for it so my body would stop reacting to the residual paint inside of me. But so far I haven’t noticed any difference since the treatment [which should have been A tipoff that the chiropractor didn't know what he was doing].
Also recommended are supplemental calcium, magnesium, and potassium, with magnesium being the most commonly recommended. I was already taking calcium and magnesium supplements as they help control my neurological tics. However, my family doctor had recommended I stop taking all supplements on the off chance something I was taking was causing my stiffness. So I did so, but it didn’t make any difference. But I did start having a problem with my tics again. So I asked the chiropractor about such supplements, and he tested me and said I should take magnesium. So I have resumed taking a magnesium supplement, along with a multiple vitamin/ mineral supplement that contains calcium and magnesium. But since I was taking magnesium previously, I really don’t expect it to make much of a difference with my SPS, but at least my tics seem to be under control again.
A person posting on a SPS forum suggested that aspartame can cause the symptoms of SPS. Aspartame is not a healthy sweetener, despite what the producers of it might say. And I would never recommend using it. But if it could cause the symptoms of SPS I can’t say. However, since I never touch the stuff, aspartame is not the cause of my SPS.
Stress was mentioned on several sites as aggravating the symptoms of SPS. And I know all too well that emotions and psychological factors can seriously affect a person's health. I overcame six-years of crippling low back pain by recognizing the mind-body connection and using various mind-body techniques (see Overcoming Back Pain). And I got the generalized pain from my fibromyalgia under control in the same way (see Emotions and Fibromyalgia). But the use of the same techniques has not made any difference with the symptoms of SPS.
Otherwise, basic health habits like proper diet are recommended. Given that I wrote a book on nutrition (Creationist Diet), I would agree wholeheartedly that following a healthy diet is important no matter what one’s health condition is. But I’ve been following a healthy diet for years, so a poor diet isn’t a contributing problem in my case. And I haven’t been able to find any research showing that any specific kind of diet would be helpful for SPS. I could trying making some dietary changes, but I would just be “shooting in the dark” as to what direction to change my diet. But if allergies and toxicity are possible contributing causes, then it would be wise to eat as natural a diet as possible. Any type of food additives can cause allergic reactions in susceptible persons and would be possible sources of toxicity. But such a diet is what I am already following.
So the bottom-line on alternative treatments is that there are various avenues that one could explore. And it would be a good idea to do so before resorting to strong and potentially dangerous drugs. However, I am already following the alternative methods that are recommended [which should have been a tipoff that they did not work and I should look elsewhere].
So where to go from here?
As of this writing (December 16, 2001), my neurologist still needs to test me for anti-GAD antibody. But since it is not always present in SPS sufferers, even if I don’t test positive for it I still probably have SPS as I have all of the symptoms. My neurologist also mentioned about wanting to do a muscle biopsy, but he really didn’t explain what he helped it would show. I didn’t see mention of biopsies in any of my research. And I am very leery about being cut into. As slowly as my body seems to be healing, even a small incision could take quite some time to heal. So unless he gives a clear reason for it, I think I‘ll refuse. But I assume there is some kind of test that will rule out the fatal form of SPS, and that I will definitely want done.
I’m almost certain he’ll eventually prescribe some kind of drug. Given all the potential side effects of the recommended drugs, I am also very leery about taking any of them. But I just might not have any choice.
I’ll continue with the allergy treatments and other natural treatments I am already utilizing. Even if they don’t help with my SPS they have other benefits as discussed above [actually no, at least in regards to NAET].
One site I saw said that physical therapy can actually aggravate the symptoms of SPS. But to do nothing would ensure that my flexibility would get worse and that my muscles would degrade over time. So I intend on continuing with the therapy as long as I am able to do so, and my insurance covers it. Even if I get very sore from it, it’s better than watching my body completely degrade.
I’ll post updates on my condition and how various treatments are working as time go on. And I will add to or correct any mistakes in the above information as I find out more about SPS. And, of course, prayers are greatly appreciated. This whole situation is rather scary, to say the least.
See Stiff Person Syndrome Sites for some of the Web pages I consulted in researching this subject.
This article is continued at Stiff Person Syndrome: Part Three.
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. Copyright © 2001-2003, 2015 by Gary F. Zeolla.
The above article was posted on this Web site December 16, 2001.
The bracketed updates were added February 2, 2015.
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