Motor Neuron Disease and or ALS can be divided into clinical subsets based on the patients pattern of weakness, abnormalities on nerve conduction studies and needle electromyography and serum antibodies against specific glycolipids.
Here are a few subsets:
- Familiar, which can be autosomal, or less often recessive.
- Clinical ALS
- Classical ALS
- Benign ALS
- Primary Lateral Sclerosis
- Multifocal Motor Neuropathy
- Cervical Spondylosis (produces ALS like symptoms, but this one can be ruled out using specific medical testing)
- Guamanian (some of these ALS cases also displayed Parkinson-dementia complex)
- Spastic Paraparesis
- Progressive Muscular Atrophy
- Progressive Bulbar Palsy
- Spinal Bulbar Muscular Atrophy
- Some forms of TMJ can also produce ALS like symptoms
A neurologist who has “specific” experience regarding ALS can separate “some” of these subsets, but many neurologists do not have the necessary experience.
Also, many of these sub-sets in reality are the same disease form, just representing differing progressive stages.
Remember, there is no definitive test to prove the diagnosis of ALS, except an autopsy. Generally the diagnosis is made by trying to eliminate other neuromuscular degenerate diseases and then waiting. But the longer one waits the more evident it becomes that a singular out-come will be produced! It is like the Beltway around Washington, DC, one can exit on to many different roadways, each with a different name. But though some routes are longer than others, they all lead to the same place!
Regardless of which of the above titles is used, as time passes by the determining factor will be the accumulation of symptoms. Don’t be negative and assume that everything you hear about ALS is necessarily true in your case. Don’t concentrate your thoughts on negatives and dying, concentrate your thoughts on living each day that you have to the fullest.
Some ALS patients live 10, 15, 20 30, or more years. Some even recover! There are no guarantees in life about anything, but isn’t it better to make the most of each day?
According to research reported by the Mayo Clinic, patients with long duration illness have the same disease as those with short duration illness. Also, Mayo Clinic investigators were impressed, that at autopsy the long duration patient’s neuropathologic findings were much the same as those found in patients who had died earlier in the course of their illness.
During a physical examination of 100 consecutive patients at the Mayo Clinic it was found five years from onset of illness that fully 20% of the patients were living. Ten years from onset almost 10% were living, and in this particular study 2 patients lived for 18 years.
Several patients whom the Mayo Clinic diagnosed as having ALS subsequently recovered. It was the Mayo Clinic’s experience that the more benign “course” of ALS could be differentiated readily from patients who demonstrated a number of etiologies for muscular atrophy that superficially resembled motor neuron disease.
Recently a definitive test for one subset of motor neuron disease/ALS has been developed and approved by the FDA. The test is for X-Linked Spinal Bulbar Muscular Atrophy. Women are carriers of this disease, but it only manifests itself in the male population.
There is some good news for those who have Spinal Bulbar Muscular Atrophy, and there is some very bad news. The good news is that it generally progresses much more slowly than other forms of Motor Neuron/ALS. The bad news is that it is familiar, or inherited.
I was diagnosed with sporadic ALS, bulbar onset, in May 1991. I had several EMG’s, blood work, muscle and nerve biopsies. My condition progressed rapidly. I lost the use of my neck muscles and could not hold up my head. I had serious saliva problems. I could no longer chew or swallow food. I was unable to drink thin liquids such as water. I used Ensure and pureed baby food and lost 30 lbs. The muscles in my throat atrophied, then my upper chest, next, into my right shoulder, right arm and hand. My strength was gone and my stamina was very low. Next I started falling often, and the atrophy moved into my right led. Then the same progression started on my left side, but to a much lesser degree. I lost the ability to bathe myself, brush my teeth or take care of other personal needs. I was on liquid and pureed feeding for almost one year. I required nursing-aid assistance for the period my wife was working.
In the beginning I read all the literature and bought into the prognosis. I was going to die and the experience prior to my death was going to be horrible. Depression started to set in. I searched everywhere for the “magic bullet”, but the one experimental drug I tried produced nothing. The main-stream drug trials that had seemed so promising were flopping, one after another.
Fortunately, for me, I was forced into the position of trying some supplemental therapies out side main-stream medicine. Most of you already know the rest of my story. I was able to reverse the majority of my major symptoms.
Now I spend my time working in the yard, doing volunteer work locally and traveling around North America doing what I can do to help ALS people and their families.
Recently, when I found out there was a definitive test for Spinal Bulbar Muscular Atrophy, I decided to give it a try. I tested positive, and then I sought a second opinion from two of the foremost experts in the world, regarding X-Linked Spinal Bulbar Muscular Atrophy.
These experts are Dr. Kenneth H. Fishbeck and Dr. Henry L. Paulson of the University of Pennsylvania, Dept. of Neurology, Philadelphia Pennsylvania. I met with Dr. Paulson who examined me and discusses the disease over the course of about one and a half hours. He confirmed that my test was absolutely positive.
Therefore, to those Neurologists who have commented to many of you that I could not have Motor Neuron/ALS Disease because I was able to reverse almost every major symptom, I would like to say “They were wrong and should have known better than to diagnose a patient they had never examined!”
Dr. Paulson was very interested in the Supplementary modalities that I had used, and had no medical explanation for why I was able to reverse neurological symptoms that are thought to be irreversible. I gave Dr. Paulson a copy of the research paper that I wrote as well as some information regarding what precipitated some of my self-healing procedures. I found him to be open, honest and sincerely impressed by what he heard.
I would say that the most exciting result from what Dr. Fischbeck has discovered, and he and Dr. Paulson have been working on could help significantly to produce a major breakthrough for all Motor Neuron Disease!
The down side for me is that I have passed the disease on to all three of my daughters and their sons each have a 50% chance of suffering this devastating disease. Also, the disease will continue to pass on to generations to come.
Just when I thought I was “On Top Of The World”, up jumps another challenge.
I will face this new challenge with positive energy and the belief that anything is possible, especially if you “Hang in there and fight”, using every possible treatment or modality, be it main stream medicine or supplemental or both.
By the way, there is still no medical explanation for why I was able to reverse those debilitating symptoms. And remember at least 10 other people diagnosed with ALS, some in much worse condition than I was, have reversed their symptoms and are living active normal lifestyles today.
ALS is a hideous disease and many more people don’t win than do win. But it’s worth trying, after all, what do we have to lose?
Love and Light to all my ALS friends and their families,