Re: Just diagnosed....help please
Like everyone has said, MS is different for everyone and there is absolutely no way to predict what your course will look like.
You need to find a good neuro, preferrably one who specializes in treating MS. There are more options than ever to possibly slow the progression, and it is much better to get started in the early stages before the damage really starts accumulating.
I would not immediately alter my lifestyle, but you'll need to listen to your body. If you are fatiguing or overheating, then take it down a notch. I love my daughter's attitude of not letting her MS define her and not being a victim of it. She continues to be the person she was before the MS, modifying only as necessary.
As far as your children go, be honest with them at a level appropriate for their ages. If they already know you have MS and you don't communicate what it really is and isn't, they'll imagine the worse. Kids have fertile imaginations! Make sure that they know that MS is not known as a fatal disease. Let them know that lots of people have it and most people can't even tell from the outside. Also let them know that over time some adjustments might need to be made and that's a part of MS. But you can't fret over what might happen.
For our family, my daughter's and mother's MS has drawn us closer together. I know this to be true for others as well and I hope that is the way it works for you, too.
As far as the prednisone, the oral steroids have never helped my daughter very much, but 3-5 days of the IV solumedrol is pretty effective. But you only use the steroids during an attack that is serious enough that it is really affecting your ability to do your daily tasks. As you probably know, too much steroid use often leads to bone loss. Also, for some people, after time they tend to lose their effectiveness.
I'm so sorry about your wife. Finding out you have MS on the heels of such a terrible loss is a rough thing. My daughter was diagnosed with her MS right after she struck and killed a pedestrian (not her fault and no charges brought against her). So I truly empathize with you having to deal with so much in so short a period of time. I'm sure you are still shell shocked from the initial blow of the diagnosis. The first year is challenging, no doubt about it. But we're here for you, so don't be shy about asking questions or sharing your concerns.
Last edited by Jewel2; 02-03-2005 at 02:21 PM.