Thanks, Dan and Jen for the thought provoking Question of the Week! Let's hope (and pray) that you get what you each are wishing for in order to make your lives easier while living with MS.
Short of a cure, I'd say an oral that I could trust 100%. I am happy with the Copaxone I've taken for the last 15 years, so much so that I work as a Peer Resource helping others who use Copaxone. When I was diagnosed 25 years ago with NO available medications, I prayed for someone to come up with a drug to help me. Now look at how many are available - by injection, oral and transfusion. But, for me, unless the Copaxone was not working for me anymore, I wouldn't change my DMD until it was announced there was an oral drug that was 100% effective with no side effects. I know, I know, I am living in The Twilight Zone (just saw that New Year's marathon so I guess Rod Serling has rubbed off on me). But that is what would make my life easier - just take a pill and it would ease my symptoms. Wow. Tennis, anyone?:)
My life would be substantially better if I could find better pain relief. Some days are more than I can take and it's difficult to relay that to my family without feeling like I'm whining.
I share your desire, Michelle. My pain is out of control most days and the ever changing cocktail of meds never seems to truly address the severity. I feel like a broken record stating my pain issues to my family. I'm spending more time in bed and alone, which I know to be unhealthy, but it's my chosen alternative to living face-to-face with dibilitating nerve pain. My wish is for "pain" to be more recognized and measurable.
Angela
I have had RRMS for 7 years, 12 if I would have believed my doctor up front. Though it is known that we can have problems with "executive function" (what exactly does that mean?) and word finding, I have not had problems until about 2 years ago when I started having problems with word finding. My goal for 2012 is to continue to find ways to do brain teasers and such to keep my mind working. I would feel even better to know that they are doing research on this MS topic, and researching the different DMD's as to how they perform in this arena or even other medications.
I feel like I am not qualified to anwser this question like some of the others, for I have only had MS symptoms since 2004, but if I am allowed to add my input for me it would be to end the fatique. I could just do more without being so tired I think I could handle it better. I have problems with my knees, and pain in my back sometimes, and my hands, but without the fatique I could over come the pain. I probably would not fall as much either. I try and read on my Kindle and do my crafts and other things in order to keep my mind sharp those of us who have MS must do these things in order to overcome some of the obstacales. It is not easy by no means it is a trying event everyday. I still make myself get up at 5:30 a.m. everyday just because I refuse to lay in the bed, I go into my junk room and just look for something to do,and believe me there is always something to do in that room.
I know it does not work for evrybody but it works for me, you just have to find your niche, good luck!
sherry/smomdukes
Read more, write more and be more disciplined. I guess that if I was more disciplined I would read and write more. I exercised a lot of discipline and lost over 50 pounds. Now I do some exercising at least 4 days a week, but I really need to do more. I have not stood or walked for 17 months and him not ready to give it up. With discipline and exercise, I know that I can do it again. I will let you know when that happens. In fact, I will probably tell everybody!
May the new year be filled with blessings and miracles for you both.
Michael
I do like to talk about how I did it because as far as I am concerned, I did it without dieting. I ate whatever I wanted to, but there were 4 things that I did not eat. They are rice, potato, pasta and bread. It took a couple of weeks to get used to and then I continued doing it for over a year. Today I still do not eat pasta or bread, except for an occasional tortilla or wrap. But that's it. I everything else and could eat anywhere. It worked and I have the photos to prove it. No dieting, just for items that I didn't eat. Try it and be surprised. Good luck.
Michael
Thanks for sharing, Michael. I remember trying the Atkins Diet which was basically no carbs and all protein. I don't know what that did for my cholesterol levels, but the weight do start to come off.
How do you find it as far as getting full (since bread/pasta/rice is what gives me a full feeling?) Thanks!
I was going through some older e-mails and noticed that I had never responded to you..... so here it is.
When I changed my diet, I learned several things along the way. One is that I no longer have to eat until I am full. I eat until I am satisfied or have had enough. For me that has been a big difference. I haven't had seconds in ages. I also no longer have that "carb addiction” that I used to have and no longer crave breads, pastas, etc. I have begun to re-introduce carbs into my diet, but very sparingly. I eat rice, granola and a few other starches but stay away from bread and pasta because I am afraid that that can become a habit too easily. I do eat an occasional tortilla or wrap, but not often.
The way I see it is that I eat what ever I want, there are just a few things that I do not eat and so far that has worked for me.
I hope this helps and will work for you too.
Michael
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News today reporting it may not be as far off as we thought...
http://www.bbc.co.uk/news/health-16362314
Thank you so much for posting this. It's not always easy to keep up with the MS news if you don't know where to look. I'm a Scot with MS as is my mother. I always figured it was caused by lack of sun (any Scot knows we don't get any - and of course it rains 90% of the time...dampness was my next guess). I wonder if upping vitamin D in my diet will be of any assistance. I'm going to try and see because now I'm living in another sunless area in Massachusetts.