The Wacky World of Multiple Sclerosis

Multiple Sclerosis (MS) is a disease which affects the central nervous system located in the brain and spinal cord. It affects how our brains sends signals to our nerves. This affects all major movements and operations of the body. These signals control movement, vision, hearing, bladders, bowels, and other bodily functions. It affects balance, coordination, cognitive functions, speech, and many other skills needed to live each day and function normally. Many people with MS still work and function with their daily tasks while others remain confined to wheelchairs and some extreme cases are those which are practically bed ridden.

This article will give the reader the real story about what it is like to deal with this disease. It will show the confusion of patients dealing with this disease and doctors trying to diagnose it.

This article is based on my own experience, and those of other people who deal with MS on a daily basis. Most people who deal with this disease can relate with a good portion of what is mentioned in this article. MS reacts and affects each person differently, but many of the symptoms are the same. Each person may deal with a different set of symptoms or all of them in different orders, but we all know how hard it is to deal with the disease of Multiple Sclerosis.

No wonder it is so mysterious, it originates in the brain. This makes it a complex problem. Diagnosis is hard and time consuming. A patient will undergo a lot of tests, go through a lot of doctors, and a whole host of varying treatments before diagnosis or answers happen. Many are lucky and find the right doctor the first time when they go to discuss the crazy symptoms they are experiencing, but most wait months or even years before they find the right doctor or get a diagnosis.

I am not going to spend a whole lot of time here going over the particulars of Multiple Sclerosis. You may get more information about this at the following page of my web site, www.tlth.org/ms.htm, or by visiting the links provided in the Resources to this article. I will touch on them where it is important to the material of a particular segment, but will place a link for more detailed information.

This article is meant to give the reader real life situations which represent what a person with MS will often deal with on a daily basis. It shows the symptoms in action. It will let the reader know what MS is through the eyes and feeling of those who suffer its wrath.

MS is not a rare disease. More and more people are being diagnosed every day. Many symptoms mimic other diseases and this further complicates the diagnostic process for many who are suffering from these strange symptoms.

This article is not meant to secure pity from the reader for those of us who suffer from this disease. It is meant to increase awareness and to bring the reality of MS into people minds.

The Confusion of Diagnosis and Treatment

You are banging into walls and can't keep a clear thought. Your body shakes uncontrollably, and you have no idea why this is happening. You visit doctor after doctor and are given a different diagnosis with each visit. You are confused and nothing is helping to make the symptoms slow down or stop. You feel like your mind and body have been placed in a blender. Your thoughts race, this way and that way, never finding a stopping point, your memory is shot, and you wonder if you are just loosing your mind.

Doctors diagnose you with depression or believe you to be a hypochondriac. They say it is all in your head. You are imagining the symptoms.

Finally, after several MRI's and a Spinal Tap, a doctor gives you a diagnosis. It is Multiple Sclerosis. Well, now you have the answer you been waiting for, but what does it mean for you? It means now you have a reason for these crazy symptoms. Now the wacky symptoms can be treated, or can they?

You then get the fun part of dealing with the side effects of ABCNR Drugs. (Visit this link, , for more information about these drugs used in treating MS.) For many it is trading one set of crazy symptoms for another set. (In my own particular situation the ABCNR drugs caused me to have more problems with my heart. I tried Copaxone and Rebif which caused my heart to race and made me feel much worse then the MS did. For this reason, I have not taken any others.) Still, others will finally find the relief they have been waiting for and can continue living their lives with little interruption.

(Note: There are many who have taken the ABCR drugs of Avonex, Betaseron, Copaxone, Novantrone, and Rebif with success and still take them which is a choice they have made based on their life style. It is not the intention of this writer to criticize these choices. There are many of us for one reason or another who have found we are unable to take them. Many others choose not to take them because their life style and the quality of life they are seeking does not include taking these drugs and dealing with side-effects. These are choices of the individual. The writer of this article will not interfere with anyone's right to choose what is best for them.)

There are several different types of MS. These make the disease even more confusing for both doctors and those who have the disease. (I will not explain each of these here. I will give the names here with abbreviations. This allows the reader to know what these abbreviations mean should they see them in this article or other MS publications. The explanation of each of these types of MS, is available at the following link)
* Benign Multiple Sclerosis (BMS)
* Relapsing Remitting Multiple Sclerosis (RRMS)
* Secondary Progressive Multiple Sclerosis (SPMS)
* Primary Progressive Multiple Sclerosis (PPMS)
* Malignant Multiple Sclerosis (Marburg Variant) (MMS)
* (Chronic Progressive Multiple Sclerosis) (CPMS)

You deal with doctors who are confused about your symptoms while you deal with your own confusion. Gee, it is a miracle that we don't end up in rubber rooms.

Most doctors don't understand this disease. (I went through a bunch and found my General Practitioner understood the disease better then Neurological Experts. There are many other people with MS who have had the same experience.)
You really have no clue how inept the world of medicine can become until you deal with a disease like Multiple Sclerosis. You are looking for answers from doctors who have no clue while you try to deal with the madness happening within your own mind and body. How ever will you survive this madness?

Before we look at how we survive, let's look at just how wacky these symptoms are and what mayhem they often cause. You see in the wacky world of MS we end up dealing with many strange occurrences. Careful insight leads us to the knowledge of the danger which could also happen. We have to be on guard to protect ourselves and others.

Examples of the Havoc MS Often Causes
(Real Life Scenarios to Bring the Reader to a Clearer Understanding of MS though Empathy.)

Example #1
You are driving down the road. All of a sudden your hands begin to shake and your vision becomes blurred. You feel like you are going to shake out of your skin. The car is weaving, and you know you must pull over.

You manage to pull the car over to the side of the road. Then, you think it may help to get out of the car and get a bit of fresh air. You open the car door, but your legs have decided they don't want to work right. Standing is difficult, but you continue to try to move these legs as they fight against your efforts. You feel like you and your legs are in a tug of war. Who will win in this battle?

You manage to get yourself to s standing position. Your legs are trying to work now a little bit, and as long as you lean on the car you will not fall down. Now, maybe you can get the vision and shakiness under control.

While you have been going through this battle with your body, a cop has spotted you. He watched as your car weaved hoping you would pull over. If not, he would have turned on his lights and made you pull over. He suspects a drunk driver is in his midst.

He watched as you got out of the car and has been watching you trying to compose yourself. He is going to go over and talk to you because he can't let a drunk driver get back in the car.

You now see the cop. It is not panic you feel, you actually feel like maybe you are going to be saved. It never crosses your mind what he is thinking. You just know you felt fine when you left the house, but now MS has hit you again. You will just have to explain things to him. After all, you did the right thing in pulling over.

He comes up to the car and asks for you driver license, proof of insurance, and registration. You give it to him while stumbling.

He does not have to do a field test on you because he believes you are drunk and he is going to take you to the station. With all he has seen, he believes this all speaks loudly that you are drunk.

You tell him you have MS, but he does not buy that answer and is going to take you in anyway.

At the Police Station, you are given a breathalyzer which you pass. Still, this cop is not convinced this is a medical condition and not a case of drunk driving.

Ok, nothing else you have said or done has worked to convince this cop you are not a drunk driver, so you hand him your doctor's name and phone number. The cop reluctantly takes it and makes the call.

The doctor faxes a statement to the police station explaining what is going on with you, but he also makes a call to the DMV and pulls your license because of medical reasons.

(This example is real and happened to a friend of mine. She was real close to being charged with drunk driving after an attack of MS Symptoms. She was totally humiliated and felt like a criminal because of symptoms of MS. She did loose her driving privileges due to Medical Reasons. She has never driven since.)

Example #2
You are getting hungry. It is now 5 p.m. and time to start supper. You put chicken on to boil. Your thinking, homemade chicken noodle soup sounds good.

Once the chicken is on the stove and you set the burner to medium, you go into the living room. You sit down on the couch and watch some television. Time passes and your mind wanders. You realize by looking at the clock that a couple of hours has passed. You find yourself in a fog and not sure what is going on, but you smell smoke and the living room is full of black smoke.

You go into the kitchen and reach the stove and realize that the chicken has dried out and burned a complete black. You turn off the stove, open the doors, and open the windows to let out the smoke.

You realize how lucky you are to have finally come to your senses. The house could have burned down if you had not realized what was happening.

This is a reality of MS you have not faced until this moment, but you now understand just how serious the symptoms of MS can be and maybe it is time for help.

(This example is real and happened to me. I had totally forgotten about the chicken on the stove. For about 10 minutes I stood in my living room not even knowing what was going on once I saw the smoke When I got to the stove I did not even remember how to work the stove at first. It took several minutes for me to figure it out.

After this incident, I was given an home health aide to help with household chores. I am not allowed to be left totally alone.)

Example #3
You wake up from a long sleep. You seem to be okay but things appear a bit foggy. This you believe could be because you have not fully awaken yet. You give yourself a few more minute before you try and get up.

You decide to take the chance after several minutes. Things seem to be a bit clearer so you make the attempt. Getting to your feet feels like it is easy enough. Maybe this will not be such a bad day after all.

You make your way to the bathroom without incident. You proceed with your morning ritual and finish by getting dressed. You then make your way to the stairs to proceed to the kitchen for coffee and breakfast.

You proceed down the steps and then something happens which you are totally unprepared for and are not quite aware of until you reach the bottom with a bang. What in the world just happened? Well, what happened is that you just feel down the steps. It is like everything just stopped and your legs quite working, or maybe it was a tremor which caused you to miss a step. Whatever happened, it is clear that you are not going to get up.

You scream out in pain out in pain and a neighbor hears your cries for help through an open window. Boy, it is a good thing it is summer time, and the window was open or your cries may have gone unheard. The neighbor calls 911 and tells you that the ambulance is on the way.

Once at the hospital, it is learned that you have broken your left hip, your tail bone, and fractured your left leg in 3 places. Recovery will be long and painful.

It was discovered that you had blacked out and lost your balance. You had fallen from the top of the stairs and landed with all your weight on your left side and bounced onto your tailbone.

Your doctor comes into the room and you are told that you will be going into a nursing home since it is now clear that you can't live on your own. You have no family to help you so this is your only option.

(This example was described by a woman who sent me an E-mail a couple of months ago. She is now in a nursing home where she has been for the last 5 years. Her injuries have healed for the most part, but now she is confined to her bed with her MS. A friend bought her a laptop computer, and the nursing allows her to have the Internet.)

The Wackiness of MS Revealed through Its Crazy Symptoms

As the reader saw in the examples of the previous section, the symptoms of MS often sneak up without warning. Many times as with RRMS, a person can go many years before being hit with symptoms. Even for people with one of the progressive forms of MS, the symptoms may change. They often do this from one day to another.

I may not cover all of the symptoms of MS in this section of the article. Many MS patients will probably find many which I have forgotten, but these will give the reader a general idea of the many weird symptoms of MS.

It is not uncommon for us to have a certain set of symptoms today, and whole new set tomorrow. This makes it hard to deal with the ever changing aspects of our disease.

Let me explain it this way. There are symptoms which a person may have all the time, like headaches, weakness in legs, speech difficulties, spasms in legs, electric shock feelings in limbs when you move them, and others. Then you will get dizziness all of a sudden. This dizziness can come out of no where and hit you without warning.

Today, a person with MS may appear normal. Tomorrow, the person will be unable to walk, speak without slurring words, understand simple daily functions, and will seem confused or disoriented.

The craziness of this disease causes a great deal of frustration. There are many drugs used to help people with MS deal with symptoms. The ABCNR drugs mentioned earlier plus others mentioned at the following link, www.multiplesclerosisresearch.com/multiple_sclerosis_drugs.htm, are used to relieve some of the symptoms. Some work and some don't. Each MS patient must talk to his/her doctor to find out what will work for them. It is mostly trial and error to find the right ones. Some never find real relief, and the relief they do find is short lived.

The symptoms of MS are many. If there is a strange symptom you can think of, it is probably an MS symptom. There is many which involve movement and happen in the limbs, neck, and back. These are spasms, cramping, electric shock like feelings, stiffness, weakness, numbness, hyper reflexes, no reflexes (a real weird one, but one which has been found to be part of my MS), complete lack of movement, and others. There are those which deal with vision and hearing. There are those which happen with the urinary tract like the inability to control your bladder. Constipation is another troublesome symptom of MS.

There are many which are cognitive in nature. These include, but are not limited to, confusion, disorientation, fogginess, memory loss, inability to think, and many more. These often make the simplest of tasks troublesome. There are many, like me, who find they can do things which are complex in nature, but can't remember how to tie a shoe.

There is no real pattern to this disease and as soon as you think you may have found one, it all changes again.

Speech is often slurred, or we can't find proper words to express the right thoughts. Some where between the brain and mouth the connection gets all messed up. I will find myself saying I want to go to the kitchen when I really am going to the bedroom. It is like it gets misdirected before it is spoken. In my mind I know I want to go to the bedroom, but my mouth doesn't get the right signal.

This is how all the signals seem to be for most MS patients. The brain sends either the wrong signal or one which is broken.

Because of this wackiness, we find that we are unable to do anything spontaneously. We have to take things slow and think about everything we do. Some times this is easier then others. It is hard to slow a mind down that is racing a mile a minute.

How Do We Survive each Day with Multiple Sclerosis?

Well, we can't give up, because we would loose the battle with the disease for sure if we did. We just have to take each day as it comes. We learn to focus on what we can do and not on what we can't. For me, what I can do is a much a shorter list. I am not sure I would remember all that I can't do anyway. Plus, do not have time to waste focusing on what I can't do because I am busy doing what I can to do.

Most of the people who deal with this disease understand that we do not have the option of taking life for granted. We have no idea what we will be facing tomorrow.

All those who have to deal with debilitating or life threatening diseases know that life is precious. We are given the gift of understanding life from a direction most never will. We see the precious moments of life as true and special moments. Each day we are able to live and function is a special day. We do not have time to worry about trivial matters.

We have to find something which we can do and put ourselves into this task. My writing and web sites are the tasks I pour myself into. Some find they can redirect what function they still have into a different task and find fulfillment in that task.

You will see people with MS sky diving, snow boarding, and many other adventurous tasks. The true accomplishments of people with MS are not measured strictly by the physical activity they put into these tasks. Many have too much limited physical activity to put into these type of tasks. They have to use what is left of their cognitive functioning.

We all must find what works best for us and use it to its fullest advantage. This is how we survive MS. Until there is a cure, we must continue to fight the disease. Giving up is not an option.