The day was a spring afternoon and the weather was mild for springtime in Wyoming. There was very little snow on the ground and it was even a good day at work. I had just been outside on a break when my wife called and said “I may have MS.” This was a not only a shock to my system, but also a day that changed both of our lives forever. The processes that a person has to go through to get a diagnosis can be painstaking. If it were not for the diligence of our family practice doctor at the time, I am not sure we would have arrived at a diagnosis. In this article I will be discussing what Multiple Sclerosis is, how it’s diagnosed, some of the symptoms of MS and what treatment is available. I will also add some of the hurdles we had to cross along the way.
The diagnosis was not completely a surprise. 16 years earlier my wife had started to exhibit some signs of MS. She had some vision problems and some tingling in her legs. Unfortunately at that time there was not clear cut diagnosis of the disease and there was a protocol that was 5 pages long that had to be met almost to the letter to be diagnosed. Her first MRI revealed some lesions on her brain. The doctor asked her if she had any accidents that involved her head. She had fallen from a horse several years prior so the diagnosis was written off as an accident. This had led us to find out more about this mysterious disease.
So what exactly is Multiple Sclerosis you might ask? MS is an auto immune disease where the body’s defense system attacks the central nervous system by attacking the myelin around the nerves. Myelin is a fatty substance that acts as a barrier around the nerves. Very similar to the coating you find around the wiring in your house. Just like some people have mice in their house that eat away at the coating on the wiring, MS eats away at the myelin around the nerves and can also damage the nerve itself. So who is affected by this disease? According to the National MS society there are currently over 400,000 people in the US that have been confirmed to have MS with 200 more each week. Women are twice as likely to develop MS as men. Scientists are still not sure why it affects more women than men or why the effects of MS are more severe for men than women. Statistics from the National MS Society states that most people contract MS between the ages of 20-50 although there have been cases contracted at earlier ages. How do you get MS? Well that is a good question. Although there is not a medical reason known, it is thought to be contracted through several ways with the most common due to the environment, lack of sunlight in northern latitudes due to the vitamin D it produces, age, genetics and ethnicity. Now that we know what the disease is lets talk about some of its symptoms.
There are a wide variety of symptoms that accompany MS ranging from numbness to loss of eyesight. The main problem with MS is it presents itself in many different ways. This disease is often confused with other autoimmune disorders such as fibromyalgia and lupus. Some symptoms to be aware of are: numbness that occurs for several days, tingling in the extremities, profound pain that is hard to describe, loss of balance, tightening in the chest and extreme fatigue. The tingling in the extremities was best put by a friend and she said “It’s just like I have Christmas tree lights going up and down my arms and legs.” Loss of eyesight and even loss of color vision have been reported. If you have any of these problems stop in and see your doctor for a professional diagnosis.
If you are going through the diagnosis stage this can be the most difficult and frustrating stage. Once you find a neurologist the real diagnostics begin. One piece of advice, if you or your family doctor suspects that you may have MS, find a neurologist that specializes in MS. During your first diagnostic visits your neurologist should schedule you for an MRI. Be prepared because you will most likely have to have contrast added during the MRI. The contrast is able to pass through the blood brain barrier and enhances the lesions that are in the brain itself. They inject the contrast intravenously in the hand or in the arm. Your doctor may also choose to have a lumbar puncture done. With a lumbar puncture they take a sample of the fluid around your spinal column. They look for abnormal T cells in the fluid. It is the T cells that attack the myelin around the nerves. One other diagnostic test they can perform is a nerve conduction test. This test is done to see if the nerves are able to work properly. Not all neurologists will perform this test because this test can be painful. The diagnosis can take some time, however; most doctors want to make sure they make the right diagnosis.
As overwhelming as all this might seem once you are diagnosed there is the question of which type of treatment is best for you. The first to consider are what is called the ABC drugs (Avonex, Betaseron, and Copaxone). These three drugs are most common. These drugs are subcutaneous injections or intramuscular injections (Avonex) into the body and can range from daily shots to once per week. Both Avonex and Betaseron are interferon drugs. There is one other beta drug on the market and that is Rebif. Rebif has many of the same side effects as Betaseron and Avonex. With interferon drugs doctors recommend that you limit the amount of sunlight you receive. Copaxone is a protein however most people with MS have problems with heat so be careful with which drug you choose. Your neurologist will help you with this decision. The next treatment option is Tysabri. Tysabri is an intravenous drug that is taken once per month and for most insurance is considered a treatment and not just a prescription drug since it has to be given at an approved infusion center. The last resort is chemotherapy. If the disease is not reacting to the other treatments the doctors may have you take chemo. This is a last resort and can only be done once so consider all options before making this decision.
In closing I do have to say that MS is very manageable as long as you can manage the side effects of the medications. The medications outlined are for slowing the progression of the disease and there may be other medications necessary to help with other complications from the disease. Eat healthy and exercise will be very important for you to maintain your quality of living. So stay strong eat healthy and enjoy life in the famous words of Mark Twain“Challenges make life interesting, however, overcoming them is what makes life meaningful. “