I was diagnosed with MS 8 years ago (almost to the day!). I was a 41 year old woman experiencing for the second time in four years numbness on my entire left side. It was like a line was drawn down the middle of my body and I was unable to sense pin pricks or temperatures on my left side. When this second exacerbation occurred, a battery of tests was ordered and MS was confirmed. I have the relapsing/remitting form of MS which means I may have an episode that will last a period of time, then it will go away. In my case, symptoms when they occur (rarely), last about 2 weeks.
I began taking weekly self-administered shots of Avonex after being diagnosed and I haven’t missed a week in 8 years. The meds don’t cure MS, but they slow the number of exacerbations that will occur, and THAT is everything. My neurologist (phenomenal!) has explained that when recovery occurs from an exacerbation, the ability doesn’t quite return to the level it was before, thus the deterioration over time. Reduce the number of exacerbations; reduce the deterioration.
I have an MRI done every 2 years. On my last MRI, we couldn’t even detect any lesions anymore. I was amazed! I thought the Avonex wasn’t a cure?! My neurologist explained that the medicine is like putting a stopper in a bathtub that you are trying to fill with water. Once the stopper is in, the tub is able to fill up. In the case of the medicine, it slows the disease and allows the body to work at healing itself. In my case it is working very well.
When I was diagnosed it was like getting punched in the gut! I was in shock for several days and for a long time everything I thought ended with “and I have MS”. It was a prevailing thought in my life. When I initially got off my “pity pot”, it was because I realized that there were many, children even, fighting for their lives for any number of reasons. The fact was I felt no different that I did the day before or the day before that. I could walk and so far was very able-bodied. It was the jump-start I needed to get my head back in my day-to-day life.
For about a year, though, everything I felt, every little pain, ache, tiredness, etc, I wondered if it was MS. I found myself buying into the “don’t overdo it”, “get plenty of rest”, yadda yadda yadda. Yes, those are important, but I was taking it to the extreme and had a moment in my life where I realized I wasn’t doing everything I could to be as healthy as I could and give myself every chance to stay ahead of this thing! I was overweight, out of shape, and very low energy. I thought that there may come a time when it would be hard for me to walk, but it certainly wasn’t going to be easier carrying the extra 80 pounds!
So, I put myself on a sensible food and exercise plan. Over the next year, I dropped the extra weight and got fit. For the past six years I’ve maintained a healthy weight and have a hard workout at the gym a minimum of 3x/week with other activity (usually a brisk walk) on my off days so I get my 10,000 steps in per day. I also make sure I don’t get too stressed out. Two of my three exacerbations I can point to an extremely emotionally stressful situation (parent related) just prior to their onset, so I try to manage be aware and manage that.
Since getting my act together and engaging in life (not just letting it happen to me), I’ve only had one exacerbation and that involved double vision. It lasted about two weeks and was a bit challenging, but then it cleared up and I haven’t experienced it again.
It’s hard to know as I get older and I experience something, is it MS related, or simply a part of my aging process. The fact is, as we get older it gets harder to determine. My viewpoint, it doesn’t matter the cause, it is what it is. . .I just deal with it.
I hope you have a good support system around you. My husband, Hakuna Matata on this board, is a fabulous support. He has been with me every week for my shot for 6 years. I’m flexible enough (due to regular yoga practice) to turn around and give myself my shot in my rear (fewer nerves). He is there with the bandage and a spank on the butt to make sure it is firmly applied
He’s also very understanding at those times that I need the extra rest and nap time.
In some ways, being diagnosed with MS was a wake-up call for me and I’ve reaped benefits from the diagnosis. I wouldn’t wish it on anyone, and the future is certainly uncertain, but how is that different for me than for anyone else? To sum up, IT IS NOT A DEATH SENTENCE! Take heart, advances are happening all the time! I’m healthier now than I’ve ever been in my life because of my focus. I made lemonade out of the lemons. . .and you can too!
If you have other questions, I’ll check back in regularly and offer thoughts from my own experience. It’s an unpredictable disease and no two experiences will be the same, but it is manageable and not insurmountable. The fact that your diagnosis is coming later in life is a good thing. The fact that you are not experiencing big mobility issues is a good thing.
I’ll be anxious to hear how your journey continues. Keep us (me) posted.
–Elaine