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Just Something About MS


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There is nothing new about this information or the what is in the Diagrams. It has been assumed for several years and I have explained it a hundred times to people. Yet for some reason I had to write it again in layman's language. I had a dream about the Diagrams as they seem to relate to network systems. For a few people, like me, it helps to see the process from that different point of view. So at times I have dropped in a technical systems analogy note. It was fun to do, for some reason, and I hope you enjoy it.




HERE WE GO


Multiple Sclerosis, MS, is a disease that affects how your body works, moves and senses. We call it a disease but it is not caused by a germ or virus. What happens is that the body's own defense, antibodies, attack the brain at random and for no known reason. The antibodies do not attack any other part of the body, just the brain. (Funky, ain't it?) There is no known prevention, no cure, and very few treatments.

The disease, or condition, is always progressive (it always gets worse and worse). It will attack some people very fast (acute) and in a couple of months the person has lost almost all of his/her muscle control. It will attack hard then stop for a while (chronic). These people have MS attacks at random over time but the damage done never gets better. The majority of MSers have an attack then get a little better over a period of time (relapsing). After each attack the person starts to get the function back but never all of it.

Now, everyone has a brain, some use it, some don't. Whether or not we do anything constructive with it, the brain still tells body parts to do things. Sometimes it tells the body to do really nasty things but that is in another story.


Diagram 1



Take for example the action Move your arm! Somewhere in the right side of your brain, things come together and a signal is sent to your left arm telling it to move. The process is not that straight forward and we have to look at the process a little closer to understand an MS attack. I have taken a small piece of the brain from Diagram 1 and blow it up in Diagram 2.












Diagram 2


An area in your brain, often several different areas, decide something is to be done (?). Then it decides what (move the arm) and how to make it happen (!). In the Diagram I represent three areas of the brain by red, blue and green. All three areas are needed to make the arm move. Each area determines the proper path to send its signal down, through nerve cells and changing directions at neuron nodes. The signals get together at one place which I am calling the Magic Node then the combined signal is strong enough and complete enough to make the arm do something.

You will note numbers along each path between nodes. Let's assume each link represented by a number is the same unit of time. In this Diagram it takes four units of time for each signal to reach the major node. Thus they get there at the same time. This is important as you will see.



NETWORK
If you are a systems person then this has to look like a network. Each neuron node is a router. Each signal is a part or packet of the same message with the same destination address. When the packets arrive at the destination host, Magic Node, they are assembled into the full message and efficiently forwarded for processing. Slick, ain't it?



OK, now let's look at what MS does to the process. First, we have to take a tangent into micro biology. All people have disease defense soldiers called antibodies. These little suckers attack anything they believe might damage the body. Next Diagram please.





Diagram 3


Like any living organism, each antibody is made of cells containing the person's unique gene structure. The DNA combo is so complex in the genes of a cell that we make science fiction movies about what we do not know about genes. What we do know is that certain combinations of DNA make us tall and dark or fat, dumb and happy.

The whiz kids don't really know but they think a certain DNA structure could 'probably' lead to MS. Maybe it is red, blue, yellow and green. After all, who would ware that color combination? They say there is no evidence of heredity links but a blood relative is 50 times more likely to have MS and a daughter of a man with MS is 100 times more likely to get it. Who are the whiz kids trying to fool?

In any case, 'something' gets the antibodies all worked up and they go looking for yellow stuff. (They turn into PacMan!) In the Diagrams yellow stuff is myelin. Myelin is the sheath or insulation around nerve cells. If it is not present, the nerve cell will not send signals. It is like stripping away the outside of a wire and grounding the electrical current.





Diagram 4


In the dotted area of Diagram 2, the antibodies went on a smorgasbord. They attacked the myelin coating as if it was a threat to the body. Look at those devils in Diagram 4. Talk about mis-communications! The antibodies rip and tare away the myelin covering. Some of the myelin fragments float away in brain water and mix with the spinal fluid. This one clue the doctors use to diagnose MS as I talk about later.

After the feast is over, and why the antibodies get full we do not know, the nerve cells are exposed in the battle field. The body tries to repair itself, like when it is cut, by forming scare tissue over the exposed areas. This tissue covers the nerve but is not so good for allowing the nerve to function. The nerve cells stop transmitting signals through the damaged region.



NETWORK
You might say a computer virus got into a node and it crashed. In a standard electrical system, the machine just stops until some tech fixes the damage. In a network the other routers try to find a new path for the message. Surprisingly the brain does the same thing.





Diagram 5


The brain says, Something is in the way. Let me try another trail. In Diagram 5 the damaged area is scare tissue. The brain still wants to move that arm so the red and blue areas find any way they can to get their part of the message to the Magic Node. As you can see the new routes are drastically different from the original but messages do get through. The brain can't repair destroyed cells, they are gone, but like a cripp it finds a way to get the job done.

Now here is where the numbers come in to play. Back in Diagram 2 it took four hops to reach the Magic Node. The time for each signal was the same, four. After the MS attack, signal parts take different amounts of time. Green still takes only 4 time units but red now takes 6 and blue takes 8. This difference in time for each part of the signal is what causes MS symptoms, at least a lot of them.



NETWORK
Just think about the programming problems when packets arrive at significantly different times. First the receiving buffer begins to fill up with parts of a message waiting for the other parts while the buffer continues receiving other messages. After some period of time the partial message may be trashed and the originator must send its message again. You can say there is noise on the line or RF interference. The result is slow throughput. In the following examples, continue to think in terms of packet switching used to direct a robot somewhere across the country.



ARM

Let's go back to the arm which is trying to move with signals that get there at different times. Each color is telling a different muscle to constrict. If the messages are forwarded as they are received by the Magic Node, then the arm would be jerky. One muscle would react pulling the arm one direction followed a short time later by a move in a different direction.

Another result might be that the arm moves slowly. It gets the signals delayed but not so delayed to cause jerking. The brain tells the arm to move red direction but not too much because blue and green directions are on the way. The arm gets the red signal and before it completes that instruction, it gets the blue signal. The movement is slow but smooth.


By the way, there is nothing special about the Magic Node. I just use the term as a location where signals come together to form a full message. In the real world, if there is one, there is no single node. It is just easier to understand MS behavior by creating a Magic Node (rather than trying to explain 50 neuron impulses functioning under chaos theory equations.)



SPEECH

When Jessie Helm delivers a political speech in his slow, rambling, North Carolina drawl, it sounds something like the problem some MSers experience when they talk. Take for example the word 'fla-tul-ence'. If each syllable is represented by a different color in Diagram 5, then the word comes out slowly or as a stutter. (Remember the difference in timing.)



THINKING

Far too often an MSer is considered a little 'slow' but keep in mind that MSers ain't dumb, they just think slower. The quality is still as good when they have the time to think the thought. Again consider the different times it takes to get the different parts of a thought together. With MS there is often some cognitive loss but this is different from 'smarts'. There is no documented evidence of a decrease in intelligence due to MS. In fact, some people believe MSers are wiser because they have trained themselves to wait until a thought is fully formed before opening their mouth.

However, this symptom is a major frustration for the MSer and their caregivers and friends. For an MSer, the thought is always 'almost' there. The little extra time it takes them to form a thought is not compatible in our fast paced world. The MSer feels left behind and his peers wonder if he is really getting the point of a conversation. This is particularly damaging to the white collar professional and can lead to early retirement or total disability. Often it is the primary reason for work force departure because white collar types do not want to make a mistake due to an incomplete thought and if they make that mistake, they are easily terminated.

To deal with this symptom the MSer's world has to slow down. They must allow more time to address issues and be able to focus on one thing at a time rather than juggling. You will often see an MSer making list after list as reminders and a means of setting priorities. A peer can show understanding by asking a question then be patient enough to wait for an answer, which may be in an hour or more if the MSer is drinking beer.

(see cognitive overload)



NETWORK
The analogy of this symptom is down grading your machine from a Pentium to a 486. There is still 32M of RAM and you can still use Word 7.0. Anyway, think about it, most of the best human literature was written in long hand or on a typewriter!



FATIGUE

Yep, signal delays in the brain can also make you tired. When the information flow is not smooth the body works twice as hard to make any movement. It is like taking a hundred stutter steps to raise your arm. Even the act of thinking is more work and it will make you tired. Can you remember how exhausted you were after completing a tough exam in school?

There are some with MS who do not experience fatigue as a primary symptom but all MSers experience it at some level. Many MSers consider fatigue the most debilitating MS factor. You see, the experience of neurological fatigue is unique. It is often experienced as bone numbing tiredness that belays any description. It can make movement impossible and the requirement for movement overwhelming. When the person with MS gets to the point of fatigue, all of the other symptoms of the disease are redoubled.

(see paper on fatigue)



OK, that's enough about symptoms. As you can see a disruption in internal brain communications can cause a multitude of problems.

(for more see symptoms)

If the wiring of the brain stays as it is in Diagram 5 with signal delivery times wide apart, we would call that level of MS chronic-progressive. The MSer gets bad (chronic) and stays that way until the next exacerbation (progressive).




Diagram 6


The most common level of MS is represented in Diagram 6, relapsing-remitting. At this level the MSer has an exacerbation (relapsing) then he gets better, almost back to where he started (remitting). The brain has had time to work through its communication problems and has found better red and blue paths to the Magic Node. In fact the red path is faster than normal, down to three time units. However, the proper time for the body to react is still four units and even though the difference in time units for signals to reach the Magic Node is closer, the difference remains. The MSer is not back to 100%. This function remains slower.

As I said in the beginning of the paper there is a third level of MS acute-progressive. This is the worst level. Antibodies attack wider areas of the brain and from probability they hit critical regions (acute). A function may not be possible at all. The exacerbations are frequent and the MSer's brain does not have time to re-route signals before it is hit again (progressive). The net result could be a bed-ridden MSer within a month and in extreme cases even death.



Diagram 7


This level is represented in Diagram 7. The Magic Node was attacked. Blue can no longer get its signal to the arm. Red and Green may still be able to get their signals through but how long it takes and what happens when the signals reach the arm can not be determined.



NETWORK
For the tech types, here is the game theory board of the various levels. Commit it to memory for there will be a test.









You may remember that I said flakes of myelin in the spinal fluid is a clue to MS and that scare tissue is formed in the brain after an exacerbation. Doctors are still not too swift at diagnosing MS but they are getting better and new tools help a lot.






Diagram 8


Two tests are most widely accepted as proof of MS; a spinal tap and an MRI. When spinal fluid is removed it can be examined to detect myelin floating around. There is only one way for the yellow stuff to get there. The doctor can do an MRI, Magnetic Resonance Image, to look for scare tissue. If the picture is like Diagram 8 with little dark areas, then it is probably scare tissue.







******************************



Well, that is all I really wanted to say in this paper. MS is a messy disease, not in the sense of blood and guts but rather in the form of what it may or may not do to the MSer AND the effect it has on the people around the MSer. Even the most curious understand little about the disease and may people think MS stands for 'Mostly Stupid'. You can't really get mad at people for what they do not know because MS is so unknown and unpredictable.

As a final point let me end with a couple of statements that I hope you can now understand a little better. These are some of the reasons I call MS a messy disease.


  1. Many MS symptoms are invisible, deep inside the brain.
  2. Visible symptoms are often misleading.
  3. Exacerbations happen totally at random.
  4. The course of MS is never known.
  5. MS is not considered deadly but for some people it is worse.
  6. An MSer goes up and down like a yo-yo.
  7. MS effects are as difficult, or more so, for the people around the MSer as they are for the patient.
  8. I recently heard a man say 'Letting go- and MS go together so that you can focus on what is important.'



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