New Member of the Multiple Sclerosis Club

Starting a new life after being diagnosed with MS

Once becoming diagnosed with Multiple Sclerosis, many of us fear what is next on the radar. Many questions asked are how will this affect my life especially my job? Will I be able to continue working, or will my employer understand some of my limitations, like missing work for appointments for tests or seeing my physician, or needing to sit more often than standing all day? Will my family or friends adjust to lifestyle changes so I can keep my condition in check? There are so many, many more questions than just this, but this is a start to many concerns. For some, it is easier to keep quiet about the diagnosis except for those who are really close to us such as immediate family.

There are pros and cons to each side of these questions. The most pertinent is what answer is the most beneficial to you? For me, I wanted to first get to know and understand this disease and where my condition was in the grand scheme of it all. I needed answers of all my options for treatments, what immediate limitations I was facing and what if any, improvements would be made by the medication my physician ordered. MS is known by many as the “Snow Flake” disease because we all respond differently to all treatments. We each have many different degrees of symptoms and location of these symptoms. Even though 80% of us are diagnosed with Remitting Relapsing forms, symptoms still vary as to where and how many lesions you have. Some may have vision issues but can walk without difficulty where others have a great deal of body or extremity weakness and have issues with walking or standing. There are those who can work their jobs without any real issues while others can’t hold out an 8-12 hr. a day job. While someone may be on one particular medication and it is working beautifully, someone else can’t tolerate it or their body doesn’t respond to this treatment. There are just so many variables that comparing our self to someone else just doesn’t work.

Finding out many of these answers only comes with time. My first suggestion is ask your physician many questions which pertain to you. Next, do your own research learning all you can about MS. Third, get to know your body! Find out what feels normal to you; figure out what your body is saying to you. Your body will alert you when you need to rest, sit or stand, how long you can tolerate being out in the heat or cold before it negatively affects you. Just like when your body tells you already that you are hungry or sleepy you will learn what signs are present that will make an impact on how you are doing. Several of us speak about our “battery” meaning our ability to go or do. Statements like my battery is going dead, or the red light is blinking on my battery gives my family or friends indication that I must stop now what I am doing before it makes me ill or causes me to fall. It has taken a few years to learn to pull back on my own before having a serious consequence or relapse. Keeping a journal is always a good way to communicate with your doctor how you are doing on each visit. Our actual time with a “one-to-one” conversation is increasingly getting smaller, so we must have questions and important information at our fingertips to assist our physician with future treatments.

There are so many resources at our disposal to use. Beside your physician, the Pharmaceutical Company where your DMD comes from often has nurses available for questions or concerns 24 hours a day. These nurses are extremely familiar with MS and how their drug works, and the side effects. They can direct you with what you need to do or if you need to contact your physician. Often they also have websites that discuss MS and the latest updates that are out there. Many websites also offer pertinent information which includes MS blogs. Most bloggers actively attend meetings or tune in to web seminars to learn and report new information, research, etc., which is being released. Of course you can find books on this disease with a host of variety of topics for adults and children.

Stay informed, take your medications as prescribed, eat healthy, exercise as your body tolerates, and don’t be afraid to try things outside the box as one would say to see if it improves your condition. You never know which off the wall recommendation will be the one thing that truly improves your condition. Least but certainly not last, learn to live with MS. Give yourself time to adjust to this diagnosis but get past it; don’t let Multiple Sclerosis take over your existence. There is a statement which is true, “I have MS but MS doesn’t have me”! Learn your limitations if you have any and adjust to them accordingly. There will always be up’s and down’s while living with a chronic disease, just don’t let the down’s take over your life.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.