Since my diagnosis over a year ago with MS, I have come to meet a lot of really inspirational people who have been living and coping with this disease. Andy, who you will meet shortly, is one of them. Multiple Sclerosis affects more women than men and so we hear more about how this disease affects women. I feel that the male perspective of living with this disease is under represented. And so I was most delighted when Andy graciously agreed to share some of his story here with us on MS Health Central. Andy is a husband, a father, and phenomenal MS blogger.
I now present to you....Andy
Type of MS you have: Secondary Progressive Multiple Sclerosis
Name of Blog: Jughead's Baltimore Blog
When did you get your diagnosis of MS?
I received my diagnosis of multiple sclerosis on Halloween, 1987, at the age of 25. I had been having problems for a few years, but I attributed the problems to some of the sports I had played. The doctors bounced around all types of explanations, optic tumors, brain tumor, nerve damage, and its being psychosomatic. The technician came in and told me it was indeed multiple sclerosis. The problem was, I didn't know they were looking for ms, no one had told me.
How did you take hearing of your diagnosis?
I was devastated to find out I had ms. We had a friend of the family who had ms, so I thought I was aware of what the potential outcome could be. I realized I in fact knew nothing about it, and immediately wondered if I was going to die? I wondered what the impact would be on my family, my wife was expecting our first child, how was I going to tell her? How was I going to tell my parents? What was I going to tell them? It was on the ride home it hit me that this was more than walking with a bit of a limp someday, this could be a life altering event. That's when I had my first emotional melt down!
Tell me about your symptoms...
My symptoms began with a slight tingling in the tip of my index finger on my right hand, easy enough to deal with. It was a few months I suppose before it spread to another finger, then another. Then I noticed that when I put my head down, a dead feeling flowed down both arms to my hands; that was odd. All of those things I attributed to having played football and lacrosse, but I was wrong. Next thing that happened was the vision in my right eye would flash in and out when I stood up, very annoying. I began tripping, and dragging my right leg about 15 years ago, running became impossible about 10, and walking has been difficult for the past 5. Overall I have numbness in both arms and legs, and everywhere else that does not subside, I have lost the ability to manipulate things like pens, or anything that takes any kind of dexterity. I walk with a cane, and wear an AFO brace on my right leg. The fatigue is always with me, and that's about it, as long as I don't get overheated. That's about it.
The hardest symptom has been the fatigue. I have tons of things I want to do, but I just can't make myself do them. The mobility is a close second, but having the desire and not being able to do it is very hard.
What sorts of medications are you using if any?
I have taken Avonex, Copaxone, Novantrone, Prednisone, and currently Rebif and vitamin D. I would have a hard time telling, or identifying which, if any of the above have benefited me. I have been doing all of the inject-able medications for about 11 years without a break from one to the next, so it's hard to judge if one was better or not. I'd like to think that I saw a benefit, I just wasn't aware of it. I have a prescription for LDN, but I agreed to try the vitamin D before I went for less traditional choices.
Do you have a personal philosophy which helps you live with this disease?
My personal philosophy is this could have been a lot worse. I have done and seen a lot of wonderful things since I was diagnosed, the least of which was seeing my 2 children being born. I think it's important to have a good melt down every once in a while, and even more important to sit and hold your care giver while they have one. If you're lucky, you aren't in this alone. Appreciate the good when it happens, the bad will be there to remind you it hasn't gone anywhere.
In your opinion, what is the worst thing about having MS?
I think the worst part about having MS has to be in the area of intimacy. I doubt that it's any better or worse for a man, but I can't speak for the women. I think I resent the invasion of MS into that portion of my life more than I do all other parts combined. If I can no longer play golf, that affects just me, but when it causes me not to be able to have intimacy on my own terms, that interferes with both my wife and me. I resent the fact that I wasn't spared that one particular indignation.
What words of wisdom would you give to people who are newly diagnosed with this disease?
Learn as much as you can about MS. I don't recall going through denial, but I did ignore it for a good while. The more you know, the more you can prepare for all contingencies. Talk about it when you have an opportunity, it helps you as well as the people around you. Never give up, never surrender!
Are there any silver linings to having MS?
Silver linings with having MS, that's a tough one. Other then the fact that it could be worse, I don't know I'd call any of a it silver lining? I suppose it gave me more of an opportunity to be an active parent, but I was that from the beginning.
Do you think we will see a cure for MS in our future?
I don't believe there will be a cure for MS. As far as I know, they can't cure anything. They can prevent things like polio, but they can't cure it, and that's OK with me. I will take that if it means my kids won't have to worry about this. I think they will find things to make it easier to have MS, but I think I'm in the club for life.
What would you say to the medical establishment if you could?
I wish there was a way to take the money out of MS, to make it less of a business. I worry that things like LDN may hold promise, but because it is an old medicine and no one profits off of clinical trials, there are not likely to be any clinical trials. I'd also like to make it a federal offense for any doctor to ever again say, "I'm not worried about it" or "You're doing great!" I guess they aren't worried about it, it's not happening to them, and I'm not doing great or I wouldn't be here!
Thanks for the opportunity to tell my story. I have a blog that I have no expectations of ever seeing on the Today show, but it's my way of talking through my life. I think everyone should give it a try, you never know who may stop in and say hey!
Published On: February 02, 2009