ProMed Celebrates National MS Awareness Week

Professional Medical is proud to take part in National Multiple Sclerosis (MS) Week. According to the National Multiple Sclerosis Society, there are approximately 400,000 people in the U.S. living with MS – with 200 more diagnosed every week. MS is thought to affect more than 2.1 million people around the world.

Supporting MS research is also personal for ProMed. One of our team members was diagnosed with the disease 12 years ago and is a testament to not letting the disease get the best of him. His name is Bob Sieger, and he’s our CIO. Bob was kind enough to answer a few questions in an effort to help others understand how MS affects people who are diagnosed with the disease.

Q: When were you first diagnosed with MS?

A: I was diagnosed about 12 years ago. I had been having what I thought at the time were strange symptoms. My legs were very weak, my right arm was becoming more and more useless. Finally, by the end of the week, we began to notice that the right side of my face was beginning to sag slightly and my speech was becoming a bit slurred. A quick call to the doctor resulted in a trip to the emergency room, where initially they felt that I had had some type of stroke. Mind you, this was bad enough news, but over the course of the next few days, and through a lot of testing, they ruled out a stroke. MS is not easily diagnosed. Many people will go years without even realizing they are having symptoms. I think I was lucky and caught it early in the disease. To verify the diagnosis, they draw a sample of your spinal fluid, not a pleasant procedure and risky at best – one misstep of the needle and paralysis could be in your future (not just from the MS). There are certain proteins that affect the immune system, and the presence of these proteins in the cerebrospinal fluid will indicate MS nearly 95 percent of the time. Additionally, several MRIs are performed because the presence of two or more lesions on the brain also indicates MS.

Here’s how MS works: In simple terms, your brain and central nervous system are attacked by your own immune system. Your brain has a layer of myelin that protects the brain and the various connections. Think of it as a series of wires that connect various parts of the brain. A red wire that crosses from one part of the brain to the other will work to help you grip a glass, for example. MS attacks this myelin, eroding it away, exposing the ends of these wires and causing them to break. So, in this example, I would lose my grip. The myelin heals, the wire reconnects with the brain and my grip is restored. Over time, the myelin is attacked so much that it can no longer heal and permanent damage occurs.

The symptoms are all over the map. I have six lesions on my brain (last time I was checked) and a couple on my spine. These seem to attack, most notably, my legs and my right arm as well as grip. On my very worst days, I can barely stand and the right side of my face gets a little droopy again. I have intermittent MS, which basically means that my symptoms come and go – which is good and bad. It is good because I could have had a more severe case and be in a wheelchair or, worse, paralyzed. But it is bad because the events I have seem to be increasing, which means the myelin in those areas is not healing as quickly or at all. I am thankful, however, that it does not seem to be spreading. I credit this will a medication that I have been on for the last three years called Avonex. It is a weekly injection, using a BIG needle, that is intended to slow the progress of the disease. It is not a cure, it just slows the progress. It seems to be doing its job so far!

Q: How does it affect your daily life?

A: Well, that really depends. Most days, my right side is generally weak. I have modified the way I will hold a glass so I don't drop it! Some days I may limp a little more than usual, most days I am sore, like I just ran a marathon and worked out all at the same time. That is the part that I hate the most, the constant soreness. I tend to take a lot of Aleve, which is not great for my liver, but it helps get through the day. By the end of the day, I am ready to just sit or lie down. The soreness tends to be worse after a more stressful day. Different things affect the MS symptoms – stress, heat, cold, basically anything that stresses the body will affect me two or three times more because of the MS. It is a bit of a battle to try and keep everything in the middle of the road, but with proper diet (which I TRY to do) and daily exercise (which I do), I am able to lessen the strain throughout the day. But the soreness is a constant. While I am grateful for the Avonex, it does have the side effect of severe soreness the day after the injection. Some weeks it is worse than others. I try to do the shot on Saturday, so I spend Sunday basically resting. It is even worse when I forget to refill my prescription and miss a week!

Q: What do you do to lessen the effects it has on your body?

A: There is really not much I can do other than Aleve or the occasional prescription pain med (usually at bedtime to try and sleep through the night). Exercise helps. It keeps my limbs loose and my muscles strong, which helps to counteract the MS. Eating better helps as well too, to keep my energy up. I am not as good at that, but luckily I am surrounded by family and friends who try and make sure that I eat properly instead of once per day!

Q: What is the typical long-term prognosis for somebody with MS?

A: That really depends. I know of people who were diagnosed one day and within months ended up in a wheelchair. I know of people who have passed away from MS as well. Long term, I really don't think about that. Right now I am focused on not letting it get the best of me, and believe me, there are days that I feel like just giving in! Having a positive attitude and keeping mentally strong is important to having a better life and coping with the disease. I like to stay involved as well. While I don't do any type of fundraising, I do contribute to the MS Society and encourage others to do the same.

Q: Is there anything you would like to tell people who might not be familiar with MS?

A: It is often a very silent disease and by that I mean you might not realize that the person next to you has it. More often than not, most MS sufferers tend to suffer in silence; their symptoms, much like mine, are not as apparent. It is a difficult disease for many people to understand. It is a SLOW degenerative process. Most people will not show really outward symptoms until their own bodies begin to break down, or until the disease overtakes the nervous system. But it is not a disease to be whispered about. For example, I really don't tell people I have it, I would guess that very few people at ProMed even know I have it. The reason I don't tell people is that I don't want to have to deal with the tilt of the head and the whispered “How are you doing?” You know the whisper, it's the same whisper you use when you talk about cancer or some other disease. It's not that I don't appreciate the concern, I do. It's that I don't want it to be a whisper. I want it to be a “so what?” I am alive, walking, strong and happy with my life. That's about all you can ask, and that is what most MS sufferers I know want as well. They don't want to be treated like diseased person, they want to be treated with support and understanding.

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Throughout the week, ProMed will be collecting donations for the National MS Society. We encourage you to click here to learn more about how you can support the MS research and awareness.