Most people who live with MS or who are close to someone that does, seem to have a pretty good understanding about what the disease is and how it can possibly affect them.
But what about the people who are newly diagnosed with MS...especially those who don't know much or anything about the disease?
Imagine losing control of parts of your body and not knowing why. Think about having unexplained fatigue, numbness, balance issues, vision problems or pain. You might spend several months, or even years, seeing doctors and specialists trying to figure out what is happening to you. You go through a battery of tests with no answers and where nothing seems to help. Perhaps some therapies you try may even make matters worse. Finally you are given an MRI and a lumbar puncture (spinal tap).
Your doctor sits you down and tells you that you have MS.
OK. What does this mean? What do I do? Am I going to end up in a wheelchair? Am I going to die?
All these questions run through your brain as you sit there dazed, scared, confused and wondering if this is the end of your world. You have no time to process all of this and then you are handed a pamphlet to read and asked what medication you would like to be on.
This is a scenario that we have heard from way too many of our clients about when they were newly diagnosed with MS. They finally have an answer to what their medical problem is, but an entire new set of questions instantly arises in this time of deep emotional stress that has just been unleashed upon them.
If this is your situation, we hope that the following advice will help you through:
First, don't panic. You are going to have a lot of questions and you won't even know what they all are at this point. Your physician (neurologist) should take the time to patiently answer all of your questions and give you as much information as possible as to your next steps in the process. Do not allow yourself to be pushed into making any decisions until you feel you are well enough informed and have had time to accept this news. There are currently eighteen MS medications on the market and they are not one-size-fits-all. Each one has its own unique set of side-effects which you should understand before agreeing to any one of them.
You need to BE YOUR OWN ADVOCATE. You have entered into an unfamiliar world and it is going to take some time to gain an understanding about what is going on inside of you. This is a disease that the medical community doesn't even fully understand and so you may not get a lot of concrete answers. For the rest of your life, you will be learning and figuring out for yourself what is best for you and your condition (as every case is different). Initially, though, you will be learning a lot at one time and you will more than likely feel overwhelmed.
Seek out others with MS. It is a tight community and our experience is that most everyone with MS is very willing to share their experience and what they have learned. There are local MS Support groups and on-line support groups. These groups can be helpful but sometimes they can be "woe is me" and depressing. Make sure you find a group of positive people who are willing to support you and help you move forward.
Talk with us. We at MS FitEffect are always available. Our trainers have had a lot of experience over the years and have gleaned great understanding about this disease and how to help you overcome it through exercise and fitness. We will help you to be proactive and to continue the fight while being positive. Our MS clients are always ready and willing to share with anybody and we will all treat you as family.
Being newly diagnosed can be a very difficult and stressful time. It is important for you to make sure that you find positive support as soon as possible, to not make hasty decisions and to be intent on being your own advocate.
You are not alone in this. We are here for you.