I'm sorry I didn't get to this sooner, I had a heck of a weekend! But before I go into the walk, my GI issues, and all my stress, I should probably answer the questions.
The first question came from Latonya: Does your doctor have an idea whether you have relapsing-remitting MS, primary-progressive MS, secondary-progessive MS or progressive-relapsing MS? I understand MS is totally unpredictable - I'm just wondering if you have any idea on possibilities of remission.
Thank you for your question Latonya. For those who don't know a lot about MS, it has been defined in 4 different disease courses or patterns of progression. According to the National MS Society, these courses are:
• Relapsing-remitting MS: A clinical course of MS that is characterized by clearly defined, acute attacks with full or partial recovery and no disease progression between attacks.
• Primary progressive MS: A clinical course of MS characterized from the beginning by progressive disease, with no plateaus or remissions, or an occasional plateau and very short-lived, minor improvements.
• Progressive-relapsing MS: A clinical course of MS that shows disease progression from the beginning, but with clear, acute relapses, with or without full recovery from those relapses along the way.
• Secondary-progressive MS: A clinical course of MS that initially is relapsing-remitting and then becomes progressive at a variable rate, possibly with an occasional relapse and minor remission.
(For more information see the National MS Society Page on the Four Disease Courses)
In order to determine what course my disease is taking, my doctor will have to track the formation of new lesions, the change in severity of my symptoms, and the changes in my neurological functioning. Because I have only been diagnosed for about 7 weeks, we have not had enough time to track the disease progression. In the coming months and years we will continue to do MRIs and neurological tests to monitor the disease and determine if I will have times of remission.
I know that isn’t really an answer, but that’s all I have at the moment. As I know more, I will certainly share the information here.
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The second question came in this morning from an anonymous commenter: Are you scared at all?
Thank you for the question Anon. The short answer is yes, absolutely.
When I first read this question this morning, it took my breath away. Actually, I still tear up just thinking about how I should answer it. I don’t know how well you know me Anon, but I am a control freak. Nothing scares me more than not being in control. This means, I need to have my feet firmly planted on the ground, I am self-reliant and self-sufficient, I need to know where I’m going, how I’m getting there, and how I’m getting home. It is important to me that I appear smart, efficient, mature, and controlled. I like to plan everything days, weeks, months, years ahead and do not like surprises at all.
The symptoms of MS have completely turned my life upside-down and no matter how much I want to be or try to be in control, I just don’t know enough about my disease yet. Having MS scares me. It scares me when I fall and am not sure how I’m going to get up. It scares me to venture out alone and not know if I’m going to have some sort of attack and end up stranded and sick. It scares me that one day I may not be able to sing, or cook, or dance. It scares me that I am no longer the person that my wife fell in love with and maybe one day this will all be too much for her to handle. It scares me that I’m 25 years old, currently unable to work, and not completely sure what will happen next.
But through all the fear, change, and uncertainty, I have to be strong. That’s my nature. I have to prove, even only to myself, that I can persevere. Before knowing that I had MS, I pushed myself to keep going and tried not to let the pain or neurological symptoms stop me. Having a name for it is not an excuse to give up and stop living. I will keep fighting and overcoming the fear will be my motivation.
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