March is Multiple Sclerosis (MS) Awareness Month. So I thought it would only be fair to really get into what MS is and how it is to live with MS. I don’t really talk about my life with MS much because I don’t want or need people to pity me. I’m okay. At the same time, if someone is unaware of what MS is or how it affects the body, I am more than willing to speak about it. If you are interested in my journey, I will share it. I can honestly say that I had no clue of what MS really was until I became affected by it. Most people are not aware of a specific condition until they are or someone they know and love are affected by it. There really is a lot I have to say about this topic that this will be a two-part post.
To start, I will give the basics of what MS is and how one can be changed by this condition. Multiple Sclerosis is an autoimmune disorder where your body attacks and eats away the protective covering over your nerves called myelin. Once the myelin is depleted, you will lose the connection between your nerves and your brain. This missed connection will make that area of the body unusable. The areas most commonly affected are the eyes, feet, legs, arms and hands. MS is usually found through a MRI where it represents itself as scars/lesions on the brain or spine. This is where the name comes from. Multiple scars/lesions = multiple sclerosis. If the doctor feels the MRI is inconclusive another test can be performed called a spinal tap. This requires them to stick a long needle in your back and draw out fluids. My back is tingling thinking about this right now. If the test comes back abnormal, you have MS. I have had both an MRI and a spinal tap. The spinal tap solidified my diagnosis along with a second opinion from the Mellen Center at the Cleveland Clinic. Now what?
Well, at this point I started to research my condition. What medications are available, what resources are out there for people with MS, in what ways I can be affected. I reached out to the MS Society first. The lady I spoke with over the phone seemed helpful, but I found it to be untrue. The only thing I received was Momentum, the MS magazine. I never received any other literature or communication from them. One time I even ordered a free workout video that was said to have exercises beneficial for people affected by multiple sclerosis. It never came. I have never reached out to any other MS association/service/agency again. Maybe when I am in dire need I will try again.
The first medication I tried was called Gilenya and I took it faithfully for about a year. It was all bad. The medication lowered my immune system so much that I started to get really bad infections, MRSA infections. This was not how I expected treatment to go. Baby bottle antibiotics and lancing the boils was not how I wanted to spend the rest of my life. Bye Gilenya! I am really bad with medication. I dislike it tremendously. At this point, I felt that I would just take my chances with MS. I could see the deterioration, but I also knew that there is no guarantee that a medication would assist me either. The reality is MS medication is supposed to delay the effects of multiple sclerosis on your body. They are not even sure if that is true since every person’s journey with MS is different.
The next medication I tried was Plegridy. It is a shot that I would inject every 2 weeks. It was an auto injector so I didn’t actually have to look at a needle or use a syringe. Once again the side effects were a little unpleasant, but not as bad as Gilenya. It gave me flu-like symptoms and it took a week for the side effects to wear off. By the time I was back to normal, it was time for another injection. Once again, I had to make the decision whether to continue on the medication, stop taking it or try another one. I am currently not on any medication, but I would be willing to try another one at some point. Probably a shot, not a pill.
Let’s be real, there will not be a cure for MS and if there is one created, it will not be affordable or widely available. These pharmaceutical companies and insurance companies are making too much money off these medications. We are stuck taking these medications that can have side effects worse than the actual disorder. Some medications can give you seizures, cancer, an incurable brain disease, kidney problems, etc. Uhh…no thanks. These are the more severe side effects but the minor ones are still annoying. This is the life of most people diagnosed with a chronic disorder or disease. Rather it is cancer, lupus, lou gehrig’s disease (ALS), thyroid condition and so many more. We are totally dependent on an outdated medical system. The “breakthroughs” that have been discovered in regards to MS is nothing different from what they knew 10, 20, 30 years ago. They have no idea what causes it. The experts say it is not hereditary, but people from the same family will be affected. Come on now, let’s make some headway in finding truly groundbreaking information and treatment that works.
Part 2 of Missing Myelin will be available soon. In the meantime, be well and whole.