MS Awareness Month – Post One

March is MS awareness month so I will post from time to time what I know about this weird disease. The physics of this is that the brain, brainstem and nerve bundle going to the spinal column have developed lesions on them called sclerosis. Since there are more than one, that is where the multiple in the name come from. These lesions have been examined in autopsies and found to be like a rubbery ball. I'm told many of them are the size of grapes. They surround a nerve bundle in the areas I mentioned earlier. No one knows where they come from or why people get them, where they attach themselves or why the symptoms are so different from one person to another. Some people have these lesions and no symptoms because the brain is fantastic and finding workarounds. Sometimes the brain can no longer overcome the symptoms and the symptoms show up. They are always different from one person to the next. There are four types of MS and no one knows why these similar lesions act so different from one person in the next.
In some people these lesions produce inflammation in the spinal areas and this inflammation produces the symptoms. There are many, many drugs developed now to treat this inflammation. As the inflammation goes up and down, the symptoms come and go. This type is called Relapsing Remitting. This is the most common form and usually shows up first with optical problems. Some people have one relapse and go many years between the next. Some people have them quite often and severe. No one knows why. This is not an exhaustive description of MS. I will jump to my type. I have what is called Primary Progressive. In my case the lesions do not produce the inflammation that you have with the type that does. My immune system spent decades attacking these lesions and the interior nerve cover called myelin. So my lesions had been working for decades before the symptoms showed up. The symptoms show up when my immune system has succeeded in removing the myelination and the nerve ends up dying. The symptoms are irreversible since the nerves are dead. In my case no one can predict how severe it will be as it progresses. In my case, I have had no new lesions since my initial diagnosis in 2009. I guess that is good, but my symptoms of the existing lesions have become much, much worse and I think most of you know where I am at physically.
Many of the symptoms I read about with relapsing type of MS, I do not get. My days are more or less the same with a very slow decrease in function. I'm told MS does not affect vital organs and that is one reason MS is not considered terminal. I do find know that my diaphragm, being a muscle, has been affected and as the day progresses my voice becomes fainter and fainter. Some nights when I go to speak nothing comes out. My wife has been pretty good at reading my lips and guessing what I need. Without that I would be up the proverbial creek without a paddle!