If you would like to contact me regarding SPS, please e-mail at: jdsnook@optonline.net or just click on the link below. Please put SPS in the subject line so I will not consider the e-mail as SPAM.
Regarding the Guest Book; I do periodically remove the comments especially if I feel they are personal.
Not to discourage those who have SPS, but I have not kept up with this site as I used to, since I am progressively getting worse, which is a fact of life, there is nothing you can do about it but accept it. I am not afraid; I live with such inner peace and, of course, continue with my medications.
As I have shared continuously, DO NOT allow yourself to come into the realm of self pity; self pity will only discourage you mentally and spiritually which is an important part in dealing with any illness. Continue to move forward. Again, always remember to set daily or weekly goals within your limits; this is mentally and healthy good for you which keeps your mind occupied so you are not dwelling with the spasms or negative thoughts.
I added an extra page of information regarding a High Protein Food List (just clink on the last link called "Protein Food List" on my SPS web site). This information is NOT for dieting, if you are able to eat more of the portions listed, please do so. Also, on the other hand, if you are overweight, this can be a disadvantage to you health-wise, since it has been proven that overweight people usually have more medical problems. I have also surmised from the numerous e-mails I received from a number of people who have SPS, also have diabetes (Type 2). Most people with Type 2 Diabetes, aka: Adult-Onset Diabetes; usually find themselves dealing with an overweight problem. Therefore this protein food list may be helpful for you, but prior going on any diet, it is always best to consult with your doctor(s).
Best of health to you, and please feel free to send your experiences and especially if you have been diagnosed with SPS, since the higher percentage of people with a diagnosis of SPS helps us push the drug corporations to encourage then to research in order to provide a method of detection for this disease.
Stiff Person Syndrome (“SPS, or also known as SMS”) is a rare progressive neurological disorder characterized by constant painful contractions and spasms of voluntary muscles, particularly the muscles of the back and upper legs. Symptoms may occur gradually, spreading from the back and legs to involve the arms and neck. Symptoms may worsen when the affected individual is anxious or exposed to sudden motion or noise. Affected muscles may become twisted and contracted, resulting in bone fractures in the most severe cases. Individuals with stiff person syndrome may have difficulty making sudden movements and may have a stiff legged, unsteady gait. Sleep usually suppresses frequency of contractions. Stiffness may increase and patients may develop a hunched posture (kyphosis) or a swayback (lordosis). Researchers theorize that stiff person syndrome may be an autoimmune disorder. Other autoimmune disorders such as diabetes, pernicious anemia (a chronic, progressive blood disorder), and thyroiditis (inflammation of the thyroid gland) may occur more frequently in patients with stiff-person syndrome.
If Stem Cell research was legal in this country (USA), more research could be done in this area for all autoimmune diseases, such as diabetes (the number one killer), rheumatoid arthritis, Crohn’s disease, stiff person syndrome, etc. Also, I have just become aware that SPS, which was known to be one in a million, is now approximately one thousand in a million. They have found that some of the patients diagnosed with MS have turned out to be SPS.
I presently have been doing a lot of telephoning different large drug corporations, who may be able to develop an antigen for marking auto-gad cells and researching for medical labs or diagnostic centers that are be able or are equipped to just do testing on mineral enzymes in the blood to see what is lacking, but with no results. In speaking to different physicians and experienced lab technicians who have a little understanding about SPS; I believe this could advance the cure of this autoimmune disease.
As of my first infusion, thereafter my treatments were scheduled for every three weeks. On January 18, 2006, I had my first abdominal spasm. It lasted approximately on and a half minutes causing the diaphragm to tighten up so I could not breathe. I just relaxed and in my mind just reacted as though I were holding my breath under water until the spasm stopped. I found that soft massage on the abdomen muscles helps to relax the muscles. This has happen twice and since then more frequently. Of course, this induces a run for the bathroom because it causes an emptying of all bowels from the colon down. (This is not to scare those who have SPS, but just to prepare you.) I have found that if you force intake of air into the diaphragm, it helps to force you to breath.
I took notice the home infusions of immunoglobulin on a three week basis, by a home care Register Nurse has been extremely helpful and understood this autoimmune disease. She shared a lot of information which definitely helped understanding as to the future events and always showed such care and concern. In that month I have had two more occurrences of abdomen spasms, which cuts off my ability to breath; both times have been short term episodes.
My doctor(s) prescribed 240 mg. of diazepam (valium) per day, along with 50 mg of Hydrochlorothiazide (HCTZ), one 325 mg Aspirin, 3000 mg Tylenol, 1 Vitamin B Super Maxi Complex and my monthly 2 days of immunoglobulin infusions (along with additional 325 mg of Tylenol and 25 mg of Benadryl prior to each of the daily infusion treatments).
In October, 2005 I was hospitalized for one week to receive my initial immunoglobulin infusions (those infusions started at 11:00 am and finished by 5:00 am) and my initial home booster infusion immunoglobulin infusions were every four weeks. It takes two days, each day it takes approximately 4 hours for the infusion to be completed. For about two weeks I feel so much better but by the third week I know my body is ready for the next treatment.
The problem with using immunoglobulin is that it is a blood taken from other people, which are checked for major viruses which at times I have found that there can be some type of a viral illness. Although, please keep in mind that precautions are taken to keep this risk to an absolute minimum. For myself, I have found at times that the following week after having the infusion; I have runny nose, cold or flu symptoms.
From what I am learning and through researching there are certain enzymes within the blood that have mutated, thinking they are the “correct” blood cell and they begin to destroy the other blood cells that are right.
The reason why the infusions only work for a short time is that the immunoglobulin is absorbed into the body over a period of time and the bad cells in my body consume the good cells.
I was driving into the office and while driving I had such a sharp pain that went across the left side of my chest and I took notice that my left arm and hand was completely numb. Immediately I called the office and said I would not be in that day; got off at the next Exit of the highway to go back home and called my doctor. He immediately had me come in and we did an EKG. My BP was high on my left arm, but the EKG was negative; the doctor insisted on doing it himself and again it was negative. He ordered a number of blood test, which all came back negative. It was at that time that I told him that when I woke up in the morning I would feel so fatigue as thought I never slept through the night. We were totally perplexed.
In May of 2005, he sent me to another neurologist. After having EMGs, CAT Scans and MRIs on both the upper and lower parts of the spine, we saw there was some disintegration of a couple of my vertebras in both the upper and lower. I felt as though we were making some headway. He ordered a number more test checking for three different types of Lyme disease, MS, anti-GADs, etc. Everything came back negative. After a month of numerous visits with the doctor, he finally said, "you’re over my head" and suggest two different Neurologists at two different hospitals.
I felt that being in my forties that I should try my best to have yearly check-ups. My Doctor, informed me that my blood pressure was too high (I don’t recall what it was), but he put me on a newer type of blood pressure medicine that he felt would do the job, but a couple months later I made an appointment because of having chronic headaches. He scheduled a CAT scan and changed my blood pressure medicine. The CAT scan came back negative of anything that could possibly be causing the headaches, etc.
In July of 2003, I had what was thought to be a stroke. By this time I had my own blood pressure monitor and my BP was 186 over 144. Again it was late at night I thought twice about the ER and waited until the following morning. When I got to the Doctor my BP was still quite elevated and he sent me directly to the hospital. After being in the ER for more than 14 hours; I did have a CAT scan and everything came back normal. At this point I was feeling like I was a hypochondriac. We continued testing and my doctor sent me to a neurologist since I still have having symptoms of a stroke victim. Slurred speech, numbness on my right side and the slowness of talking (I knew what I wanted to say, I just could not get my words out). What a frustration it was to go through, I believe only someone who has had a stroke could understand those feelings.
In November of that year, I was renovating our kitchen and I began to realize that when I was using certain muscles that they would be to go into a spasm or lock in their present position; but just to get the work completed I just cast off the situations until one evening while hammering a nail, my fingers literally froze onto the hammer and the muscles in my forearm were frozen. The only way to release the hammer was to use my other hand to pry my fingers loose from the hammer. I called it a night and went to bed.
A couple of days later I realized that my right side was in total pins and needles. I was so difficult to walk, since it felt as though my leg was completely asleep; yet I clearly remember that every morning when I woke up that my sheets and pillowcase were damp from sweating. The pins and needle feeling lasted for approximately one month. All the tests that were done came back negative; it was so frustrating. I came to the conclusion that it was nothing more than neuropathy from the stroke.
From this point on I was becoming so much more aware of my body and could tell immediately when my blood pressure was up; even though I was so faithful about taking my blood pressure medicine.
From being a tall skinny teenager of 6 feet 1 inch and only weighting 160 pounds; by the time I reached my thirties I gained weight and was around 220 pound so I thought it was time to get into a gym and work out. Now being a “Taurus,” I always had the need to do my best at whatever goal I set before myself. I went to the gym at least 5 days a week, listened to others who seemed to know what they were doing and then finally chatted with a trainer who really knew how to work out and build muscle. He taught me the importance of concentration on the muscle you were working on. He give me some great advise as far as scheduling your workouts for certain muscles for certain days, in other words, never work on the same group of muscles two days in a row. So, I set my schedule to concentrate on certain muscles for each of the five days I would go to the gym. Each workout would be for at least two hours a day or more; the key to me was to get a “good muscle burn.” I would be at the gym at 6:00 am until 8:00 am. I saw such a difference in my body. I gained muscle in every part of my body. I went from this thirty-slightly overweight, pot belly pouched guy to muscle growth with definition. I watched what I ate, took vitamins, protein drinks, etc, but everything I took was natural. (By the way, all the cases of people that I have contacted who have SPS were into heavy body work-out.)
During this time of workout, I would suffer such cramps through the night, but just figured that was just part of the workout. The gratification and compliments would just encourage me to keep up the good work. I finally reached a point where I had a six pack set of abs, 46 inch chest/pecs, 24 inch quads, enormous calves, 17 inch upper arms and 9% body fat. My body was solid as a rock. But I pushed it too far. Once a month a would work up to lifting 1000 pounds on the reverse incline for my quads and calves and ended up blowing a vein in my ankle area, leading me to surgery consisting of striping and replacing the veins in my one leg. After that, I my workouts calmed down to just toning muscles.
But, again, through all this every night I would suffer cramps and night sweats.
In October, the year of 2000, I had to have surgery; it was just to be an in/out surgery. I was advised when I came out of recovery before coming home that I would have to change the dressing of the incision. They gave me plenty of gauze and tape, etc.; but that evening I realized that my incision had completely split open. It was late and I just did not feel like going back to the hospital and deal with the emergency room, because I never had good experiences with ERs. So I just packed the area with gauze and called the surgeon in the morning. He had me come in immediately and for a week, each day I would go into his office and he would remove the gauze and put silver nitrate into the open area so that it would heal from the inside out. (This is another symptom of SPS.)
I shared this because this is very important with Stiff Person Syndrome (SPS). Of course, I never realized this until after my confirmed diagnosis around August 2005. My different doctors had a feeling that I could possibly have SPS, but the amino GAD test always came back negative (40% of people with SPS who have had the amino GAD test do return negative). After contacting numerous laboratories dealing with testing of auto gads I became aware that their are no re-agents to test auto gads; it consist of numerous testing and calculations to determine the diagnosis.
At the age of 21 I enrolled in college after working for 5 years; I came to find out that had I gone straight to college I probably would have received some type of grant to spend my time as a total student, but because of need to earn money for my college education, I did not qualify for any grants and had to work full time on evenings shifts to go through college. Again, fatigue was normality for me so I knew if I wanted my goals, I had to work. So I carried 16 to 18 credits a semester to complete my goals and worked full time throughout my four years of undergraduate work.
Again, I always noticed that every morning when I woke up my sheets would be damp from night sweats, but again to me that was normal, since that it always happen as a child.
I couldn't afford insurance so going to doctors was out of the question. I think I may have had my first real check up when I was in my late thirties. But not realizing that some of these events were not the norm, I didn't even consider sharing that information with the doctor.
I am the youngest of eleven children and was raised on a large dairy farm and at the age of 9 was thrust into doing farm work as an adult since all but two of my siblings were left on the farm; which the other sibling was a girl and was not expected to do the farm work. My father also worked away from the farm during the day since he also work as a carpenter/masonry. So this left a lot of the responsible of the farm on me and my mother. Being raised with parents who were in their mid forties when I was born, of course I was then inbred with their working principles. So my schedule during the school year was waking up at 5 or 5:30 am, doing the farm chores, then going to school, coming home, having a snack and going back to the barn to continue the dairy farm work, finishing around 8:00 PM; having dinner and then doing my homework. So fatigue was another aspect I had became accustomed to as part of life. But I knew as a teenager that if I wanted to leave the farm school was important and poured myself into my homework and learning as much as possible since it was my only means of leaving the farm and became important to be or do something different with my life.
I was average height at the age of 9, weighing about 50 to 60 pounds but was expected to work as a man. I remember of having cramps in my different limbs, but in those days it was brushed off as “growing pains.” The cramps continued on a regular base and I just accepted them as nothing more than “growing pains,” since a child you always accept what your parents tell you because in our minds our parents are always right.
I often regretted the farm, especially as I grew into my older years as a teenager, watching other children/teenagers being able to do things that I just did not have the time to do. So I promised myself that when I turned to the age of 18 that I was leaving the farm; as I had forewarned my parents, beginning at the age of 16 and that they should consider selling the farm.
Since my birth date was in the month of May and my High School graduation was at the end of May I found myself a job and an apartment as I said I would do.
I was taught as a child not to complain and so too many times in life I just accepted whatever came my way as “this is normal and complaining never changes things, it just pulls you down mentally and emotionally, or gets you into trouble.”
Even though I was no longer working hard on the farm, I still continued having cramps which most frequently would happen during the night hours. I would just rub the muscles until the cramps subsided. In my twenties I began to realize that I would often experience the tingling sensation as though your leg or arm would “fall asleep,” or really, what was happening was the circulation was being cut off, which would cause that sensation. I just ignored it and did not say too much about it since again, complaining was not a part of my personality. I figured since I was still in my twenties I was still going through growing pains.
Research on stiff-person syndrome is aimed at enhancing scientific understanding of the disorder and evaluating new therapeutic interventions. If stem cell research was allowed in the USA they could check to see what enzyme minerals are missing; take the person with SPS blood using DNA resources to restore minerals to fight against the disease.
There is no cure for stiff-person syndrome. The long-term prognosis for individuals with stiff-person syndrome is uncertain. Management of the disorder with drug therapy may provide significant improvements and relief of symptoms. Muscle spasms can cause the breaking of bones, respiratory failure and/or with certain therapy used it can destroy the involuntary muscles than possibly causing cardiac arrest.
The drug diazepam, which relaxes the muscles, provides improvement in most cases. Baclofen, phenytoin (this medication has too many side effects, creating more problems than you already have with SPS), clonidine, or tizanidine may provide additional benefit. In some patients, immunomodulatory treatments such as intravenous immunoglobulin may be beneficial. Physical and rehabilitation therapy may also be needed. (Before taking any treatment you should always check what the side effects are before committing yourself to them.)
4:00 AM. I woke up having five separate abdomen spasms causing the lack of the ability to breathe. The those situations, I relax, gently rub the abdomen, swallow large amounts of air into my diaphragm until it expands enough to release air. After the exhausted experience, I finally just got up, got dressed; made a pot of tea. Of course I took my valium and Tylenol to help. So far this morning I am not feeling very well. I’m confident as the day progressed I will feel better.
5:00 AM. I woke up having another abdomen spasm, waking up realizing that I was gasping for air from the lack of ability to breathe. I have found that every time this abdominal spasm takes place I need to rush to the bathroom, because it causes everything from my large intestines down to be flushed out of my system.
Both sides of my family carry autoimmune diseases; my maternal side of the family has two cases rheumatoid arthritis and diabetes. On my paternal side of the family there are three cases of Crohn’s diseases (plus a half sister who was diagnosed with Crohn’s disease); also, another autoimmune disease, diabetes, does run on both sides of the family (paternal and maternal). I just found out that my grand nephew was diagnosed with Crohn’s disease, he was eight years old when he was diagnosed.
I am often wake up different morning with abdominal and muscle spasms along with my muscles being stiff as a board, (along with periodic abdominal spasms throughout the day) so it usually takes a little time in moving and flexing the muscles to relax them enough to get out of bed, showered and clothed. The infusions of immunoglobulin have helped tremendously. After the first day of the infusions I find a great change in the muscles relaxing even in the morning, so this is working. The 240 mg of diazepam is also a tremendous help. On the whole, I have found that stress seems to activate the spasms and have found the necessity of trying to keep that to a minimum, which is sometime impossible in dealing with the everyday living situations.
Because of a response from a doctor in Rome, Italy, from viewing my web site on SPS, I was asked to come to Rome to speak with a doctor who has a clinic. He happens to have three patients who he thinks has SPS. We met at a piazza and spent about one hour and a half discussing this rare disease. He was quite impressed with the information, my treatments and the information on my web site. At the moment he is only giving his patients valium, but there is no progress, in fact they seem to be failing physically as well. He was very interested in the infusions and asked many questions about immunoglobulin and I attempted to explain the medication to the best of my knowledge of what it was, the process and the expense of the treatments. I left the doctor and one of his staff members, who spoke fluent English in case interpretation was necessary. The end result was the cost of the infusions was a conflict with Social Medicine; it just would not cover the cost of the infusions.
One of the common effects of SPS, is when closing your eyes, with your feet are side by side, you often have the possibility of losing your balance. This presents a problem especially when taking showers, especially while washing your face, of course, it is normal and imperative to keep your eyes closed, since the soap or any other type of facial cleanser will sting the eyes and that is when you have the tendency to lose your balance, unless you position your feet in a vocal position I learned years ago while taking voice lessons. I have presented two graphics, one is angling your one foot, which enables you to bend the knees much easier which helps to maintain balance while the eyes are closed. This is essential especially with showering to prevent any falls or further injuries. To the right are two illustrations of how to position of your feet, showing the incorrect and correct position:
On my SPS site, I just read a comment from someone who signed my guest book:
Dear Guest, I am sorry to hear of your diagnosis. If I had your e-mail I would have responded to you individually, but under your circumstance, I decided to put it on my web site in case it would help someone else. Number one, in answer to your question, I would speak with your doctor regarding the ability to work. The progression of my SPS has caused me to become disabled at the end of May of 2005.
In your circumstances I would initially speak with your doctor regarding the amount of valium that you are presently taking and how your body is reacting to it. And then, keep an ongoing journal of any changes (which will happen as time goes forward). You would be surprised how helpful that journal can assist you as you may reflect your experiences with your doctor(s). It is so easy to forget some of those important changes that take place within your body. Also, inquire within your family history or other family members who may have auto-immune diseases.
I can only tell you my experiences and maybe this will help you. Different medications can and will react to people in different ways. On my initial dosage of valium, I found myself becoming drowsy and taking a naps throughout the day. Now that I am taking 240 mgs of valium a day, I have found that my body has built an immunity to the valium and it now keeps me awake or alert even through the night; with the exception after having my Intravenous Immune Globulin (IV IG), which I had every three weeks. It then it seems to counteract the affect of the valium so I could sleep during the night. My body has now built its own alarm clock that every four hours my muscles begin to tighten up and I know it is time to take my 30 mgs of valium (which is, every four hours or 6 times a day).
With some people their IV IG does not affect them for at least a couple of days. My body seems to respond to the medication within 24 hours of my first dosage (which I had over two days). So it goes to show that each body reacts to medications in different ways. My third week was the worst; that is when I begin having the night sweats and sleepless nights. At that point, I looked forward to having the IV IG; it is also when I having my worst time with movement. At that point was when I was prone to use the cane or walker. Also, with SPS, you will find it difficult using a cane for longer walks because of the cramping of the hands, or should a use the term, locking of the finger position on the cane. That is why I have a walker with four wheels. The reason for this is so I can keep my hands flat or use a light grip to move around. Without the four wheels you have to grip the handles to move around which defeats the purpose. The four wheel concept is something that I came up with, even though; different health providers do not provide them because they believe them to be dangerous when using the walker. Maybe for the elderly, this would be a problem, but with SPS, I consider it to be very helpful. The only way you can have a walker with four wheels is to order an extra set of wheels over the Internet.
The best mental medicine to use is to: (1) not to have self-pity. Pity can only bring on depression, which builds stress and stress is one of the factors that will initiate muscle spasms. (2) Keeping a positive mind and setting goals within your physical abilities which will keep yourself busy and will mentally help you more than anything else to take your mind off your disease and cause you to be creative. There is nothing more rewarding then to stop, sit back and see what you have created. (3) Always count your blessings on a daily basis; there are always people worse off then what you are going through. Last and most important, get to know your own body, your body parts, their reactions, and what is normal and abnormal. Never assume because your doctor(s) are educated people that they are gods. Yes, they are intelligent, educated people, who have their specialization, but they are not mind readers, therefore your knowledge of your own body and your self-motivation to keep a current journal will only be helpful to inform your doctor(s) of past unusual events.
Typical Stiff Person Syndrome (SPS) developed increasingly frequent attacks of muscle spasms with severe paroxysmal autonomic dysfunctions such as transient hyperpyrexia (abnormal high fever), diaphoresis (severe perspiration), tachypnea, tachycardia (excessively rapid respiration), pupillary dilation (excessive dilation of the pupil), and arterial hypertension (an increase in blood pressure in the pulmonary artery or lung vasculature, leading to shortness of breath, dizziness, fainting). Auto antibodies to GABA-ergic neurons were identified in the serum of two patients and in the cerebrospinal fluid of one. Both died suddenly and unexpectedly. General autopsy did not reveal the cause of death. Neuropath logical studies revealed perivascular gliosis in the spinal cord and brain stem of one patient and lymphocytic perivascular infiltration in the spinal cord, brain stem, and basal ganglia of the other. The occurrence of a chronic inflammatory reaction in one of the two patients supports the idea that an autoimmune disease against GABA-ergic neurons may be involved in SPS. A review of the literature indicates that functional impairment in SPS is severe and prognosis is unpredictable because of the potential for sudden and unexpected death. Both muscular abnormalities and autonomic dysfunctions may result from autoimmunity directed against GABA-ergic neurons.
After almost 2 years of having the infusions of Intravenous Immunology ("IV IG") (the infusions were for two days every three weeks) along with the 180 mgs. of Valium per day, I realized after a year and a half, the infusions were only lasting approximately a little over one week, my body had become immune to the auto gad treatment, although I continued the treatment for a couple more months I new I had to make some changes which were to either up my dosage of IV IG to every other week or change my treatment completely. During that time I researched other therapies. Since this treatment was so expensive and I also took notice that my kidneys were not holding up to this medication, after consultation with my doctor, I choose to change my medical therapy to Neurontin (or the generic is Gabapentin). Knowing that Valium is a substance controlled drug, I had to slowly come off the Valium (because if you stop a large dosage of Valium immediately it could cause you to go into a coma). For the first week I started the Gabapentin with 300 mgs. per day and dropped 30 mgs off my large dosage of Valium per day, then the second week I added an initial 300 mgs. of Gabapentin, dropping another 30 mgs. of Valium per day; I continued this for the following weeks until I was completely was off the Valium and now taking 1200 mgs. of Gabapentin. In the adventure of this change I expect possible changes and experiences, but it was an easy change, the worst was experiencing dizziness (which is common with Neurontin), and began to look back to the previous weeks to the time when I was feeling my best, which was when I was on my lowest intake of Valium along with the Gabapentin. So I began to add a low amount of Valium with the Gabapentin and within a week I was feeling much better. I shared this information with my doctor and it was considered to be a very good decision and agreed that this was the best medical therapy for the moment.
Also, I must address a good factor in using Gabapentin, I no longer had the constant excruciating headaches (now please keep in mind, this is the way Gabapentin affected my body chemistry, I cannot guarantee this medicine would work on anyone else in the same manner). As I shared in the previous paragraph, when I totally came off the Valium and just on the Gabapentin alone I also came down with the flu which followed into pneumonia, therefore, I did not want to make any changes to my medication until I was over the pneumonia in order to make a good, clear decision regarding my medical therapy. During my time of having the flu I began experiencing spasms along with the dizziness. Once I was over the flu is when I re-evaluated my best response to the blend of medications which brought me the decision of taking Gabapentin and the low dosage of Valium together worked the best for me. It is important never to make decisions of changes to your regular medication while experiencing a short term illness.
The good part of Gabapentin is that it controls the spasms in the voluntary muscles and excruciating headaches. The bad part is that over a long term of high dosages of Neurontin/Gabapentin it will deteriorate the involuntary muscles. Your body consists of both voluntary and involuntary muscles.
For a better understanding the autoimmune disease of SPS causes cramps or spasms in the voluntary muscles of your body; which are caused by the lack of auto gads within your blood cells caused by mutated cells consuming the auto gads; over a period of time the spasms or tightening of the muscles in the back cause the deterioration of the spinal column, causing the central nervous system to be pinched, which causes the electrons in the nervous system not to work in their normal capacity, therefore causing spasms to occur in the voluntary muscles (as you can see it is a true domino theory). As SPS progresses the voluntary muscles continually are active creating cramps and spasms occur by: being over worked, unexpected hits, injuries or surprises to the body, and most important of all stress, whether physically or mentally; these facets of stress can and will initiate spasms within the voluntary muscles.
Now what are the differences between the voluntary and involuntary muscles?
"Voluntary" muscles are the muscles that you can normally control (e.g.: arms, legs, any exterior movable part that you can normally do with your own ability or choosing); they are also referred to as exterior muscles; although, I do not like to use the latter term since some of the voluntary muscles are deeper inside the body, such as the diaphragm muscles and all of the inner throat muscles, which SPS definitely affects.) Not to scare you, but to make you aware, as the disease, SPS, progresses, the spasms can cause you to experience difficulty swallowing, and difficulty with the ability of breathing from your diaphragm (in those moments, the best thing to do is just relax). If you are not into meditation, it would be an important step for you to take, in dealing with your illness. I happen to be a spiritual person and therefore I have found my place of meditation and have an inner peace. You want to build an environment around yourself that is stress free and meditation is a great tool to bring you to that place.
"Involuntary" muscles are smooth, uninucleated, non-branching muscles that are not directly controllable at will. Basically, involuntary muscles are controlled subconsciously by the brain. Involuntary muscles, or smooth muscles, or internal muscles, are muscles such as the heart or cardiac muscle, eyes, reproductive system, internal organs, digestive system, etc.
Cardiac muscle: a type of striated muscle found exclusively in the heart, can be called an involuntary muscle, although it may be classified separately due to its structural differences. It is controlled by nerve impulses produced by a natural pacemaker called the sinoatrial node, the rate of which is controlled by the autonomic nervous system.
Smooth muscles, a type of non-striated muscle, include the radically arranged iris muscles, the digestive system, reproductive system, major blood vessels, the skin, and internal organs. These are also controlled by the autonomic nervous system.
Involuntary muscles are muscles controlled only by the brain. These cannot be controlled consciously. The pupils of the eye are an example of this as they contract quickly when the eye is exposed to bright light.
Another side effect of Neurontin is the retention of fluid called "edema." From August to mid October my weight had changed from 172 lbs. (78 kilograms) to 230 lbs. (104 kilograms). This became extremely taxing on the heart, as well as my whole body. My heart rate was constantly irregular and had increase about between 20 to 30 beats per minute, plus my blood pressure had increased because of the retention of water fluid.
My doctors changed my prescriptions back to maximum amount Valium; plus heart medication (Carvedilol), lasix (Furosemide) and potassium (Klor Con M20 Potassium).
It has taken a year but I have lost a lot of the fluid weight. I am now down to 185 lbs. (84 kilograms). I still continue having the spasms, but I make the best of it by trying to keep as stress free as possible.
At present, March 2009, my weight varies from 170 to 175 lbs. (77 to 79 kilograms).
Again, if Stem Cell research was legal in this country (USA), more research could be done in this area for all autoimmune diseases, such as diabetes (the number one killer), rheumatoid arthritis, crohns disease, stiff person syndrome, etc. Also, being aware that SPS, which was known to be one in a million, is now one thousand in a million. They have found that some of the diagnosis of MS has turned out to be SPS. With all the research, telephone calls and e-mails sent to the different large drug corporations, who may be able to develop an antigen for marking auto-gad cells and researching for medical labs or diagnostic centers that are be able or are equipped to just do testing on mineral enzymes in the blood to see what is lacking, but with no results. In speaking to different physicians and experienced lab technicians who have a little understanding about SPS; I believe this could advance the cure of this autoimmune disease.
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