What is MS?

I have decided it is time to write an informative blog. I have written about multiple sclerosis before but many still do not have a clear understanding. I know some of my family members and friends struggle with trying to explain this complicated disease and how it affects me to others. I apologize if this is repetitive and it is lengthy, but hopefully the information will help someone.

Just know like so many other chronic diseases MS affects everyone somewhat differently. There is a huge spectrum of disease and disability for everyone diagnosed with MS. There are different forms of the disease. Some stay stable with little disease progression for many years and some progress quickly. There are more unknowns than certainties when it comes to MS. There is no cure and medical treatment is limited. I certainly do not fall neatly into any category and I have a history of cancer. Both of these factors make medical decisions more difficult.

Multiple Sclerosis is an autoimmune disorder. This means the immune system attacks the body. With MS the body attacks the nerves of the brain and spinal cord. The outer coating of the nerve fiber called the myelin sheath breaks down in some spots down causing lesions or scars. Symptoms vary according to the location, size, and number of lesions in the brain and on the spinal cord.

Common symptoms can include vision problems (Optic Neuritis), numbness and tingling, dizziness, thinking problems, loss of balance or coordination, fatigue, bladder or bowel problems, muscle spasticity, walking difficulties (gait), and pain. What is important to understand is that while these are physical symptoms, they are caused by nerve damage. In other words, if the brain can’t get the message through, no amount of therapy or exercise can change that. Therapy and medicine can help manage the current condition but cannot reverse the damage.

The most common form of MS is Relapsing Remitting (RRMS). With this type of MS a person experiences episodes of symptoms called exacerbations. The exacerbations can happen at different intervals for different people and may or may not cause a worsening of symptoms. Typically the more exacerbations someone has the more the disease will progress over time. About 10% have Progressive MS which advances from the beginning without episodes. Most people with RRMS will transition to Secondary Progressive MS (SPMS) at some point which means less episodes and more progression. That is where I believe I am.

Diagnosis is not always easy or clear cut. Many tests are done including one or more MRIs. In my case I had my first episode in 2005, when I lost vision in my left eye temporarily, and started experiencing some dizziness that would come and go. I also had some minor tingling in my left foot and arm. The criteria did not line up for an MS diagnosis so I was diagnosed with CIS (Clinically Isolated Syndrome). This means I experienced an isolated episode that may or may not turn into MS. After a year and a half of testing and searching I finally accepted I did not have MS. I still experienced fluctuating dizziness and occasional tingling which were usually worse during the warm months.

Between 2005 and 2014 I did not notice any progression or any distinct new episodes. The same symptoms were always present although sometimes worse than others. It is possible I had small episodes and was just unaware. I did not pursue any follow up tests during that time. It wasn’t until the summer of 2014 that I started to notice leg weakness and a worsening of symptoms. At that time I was in Florida dealing with the return of cancer. No one was paying attention to the possibility of MS. I knew something was wrong but it still took me a year and a half to seek out some answers. I guess I needed to make sure I wasn’t dying first. Finally in December of 2015 I was officially diagnosed with MS.

After my first episode in 2005, the MRIs showed no lesions in my brain and only a possible lesion on my spine. In 2015 there were anywhere from 15-25 lesions visible. Most of you that have seen me in the last year have seen the progression. I am using assistance whether it is a cane, walker, or scooter most of the time. The wheelchair is coming soon. And although it does make me sad I know that when I get off my feet I feel so much better. I have told many doctors I would rather be in a wheelchair and feel good than just feel bad all the time.

The medical options for MS are limited. The most common types of medicine help reduce the number of episodes so the progression is slowed, but have only proven affective for the most common form of MS, relapsing-remitting. I have tried 3 of these medicines which require frequent self –injections and have chosen to stop all of them due to side effects. I just felt bad all the time. Although the doctors are hesitant to say it because MS is such a difficult disease to pinpoint, I am almost certain I have progressed to SPMS, in which case the medicine would not be effective anyway.

My goal right now is to find options that will not harm me and help me feel better. I was taking a medicine that helps some with walking and fatigue (Ampyra) for nearly 3 months but due to some complications I had to stop taking it at least for now. There are others medicines being studied and one that was just approved for the progressive forms of MS, which is exciting, but for me they are also not an option due to my history with cancer. There are trials being done with stem cells but again I do not qualify because of cancer. I still take some supplements everyday although not nearly as many and adhere to a pretty strict diet. I take medicine that helps with fatigue on busy days when I need a boost. I have found though it to be less effective if I try and take it every day.

There are days when I am just tired. My left leg is getting weaker. I am having a harder time with yoga but I still do what I can. I am trying to swim at least 2 days a week. There are days when I will be walking fine for one hour and then barely walking the next. It is hard not to be in control of your own body but I am managing. I have been fighting bladder infections since December and hoping I can get that under control soon so I can go back on Ampyra and start feeling better.

There are people who have reversed the effects of MS through diet and alternative methods. I have read and studied them. I follow a mostly anti-yeast, anti-sugar diet and have for 3 years. Nothing has slowed my progression of MS but remember I am currently beating the odds on cancer which keeps me motivated.

I write because I enjoy it and it can be therapeutic. I write for understanding but not for sympathy. I write because I see confusion, concern, and worry. Those that really want to know what’s going on will read what I write. I love it when people ask me specific questions instead of just “how are you” because it means they are interested. Managing MS is my world right now, just like cancer, Alzheimer’s, diabetes, arthritis, or any other ailment that can consume your life.

We all have challenges. Some are harder than others. Making the most of your challenge is the best you can do. Right now I am determined to still enjoy life. Don’t feel sorry for me if I am using my walker, scooter or in a wheelchair. Those aides are helping me enjoy life. So much is available to the disabled. I just have to look beyond the word disabled and realize how much I can still do. With 2 boys who love fishing I think that might be a hobby I need to embrace :)