Where to turn...
When I was first diagnosed, I looked all over the internet for information about multiple sclerosis. I discovered that there were only a few sites with reliable information. The rest were either attempting to sell the latest "cure" or talking about worst-case scenarios. Based on what I found, I was destined to live in a wheelchair for the rest of my life. The truth is, the stories that are news-worthy are the ones that are extreme. In fact, there are a lot of people with multiple sclerosis (especially with today's drugs), that live normal lives. I would have liked to have known that during my diagnosis.
I remember online chatting with a MS "support group" and hearing the horror stories from these people. I was totally overwhelmed, and felt powerless and hopeless against this disease.
The National Multiple Sclerosis Society is the site I went to for a lot of information. They have real support, facts and latest news links which I found very useful. It was nice having a place I could go to where I knew the information was reliable. This is a good place to start for the newly diagnosed.
Comments
While most people with MS can live a relatively normal life with few limitations, please don't forget that those "worst-case" scenarious you read about really do exist! I 30 and was only diagnosed 4 years ago. I am now almost completely wheelchair-bound, can't work or drive, and rely on in-home help for basic things like laundry, meal prep, housecleaning, etc. I use all of my meager energy to take care of my 14mo old and my 2.5yr old daughters! My husband is a huge help, but he has to work to support us all.
Posted by: Rebecca | August 25, 2006 02:53 PM
I'm so sorry for the lady who sent in a comment on August 25th, but I have something to say that might make me sound cruel or cynical. I am one of the ' MS walking wounded' with a large amount of pain and numbness in both legs. I am really fed up of articles in the press in which someone is telling their story about their MS, and along comes the old favourite - 'I was diagnosed with MS, and within 2 weeks, I was in a wheelchair'. My comment is, if they HAD NOT been diagnosed with MS, would they still be walking about and acting 'normally?' I agree there are really sad cases where being in a wheelchair is a necessary evil, but to a huge amount of newly diagnosed I think it either comes as such a huge shock that they think that is the only future for them, or they were looking for a reason to be cared for. The truth is, if you don't use it you lose it, and once ciculation is gone from your legs and feet, it won'tcome back, and then you have no option but to be in a wheelchair. Sorry if these comments hurt/annoy people, but I know of a lady who was diagnosed with MS, and since that DAY, her husband has to do everthing for her including lifting herin and out of the bath. You only have one life - do you really want to spend it at child - height and on wheels? I apologise to anyone that Ive hurt by these comments. Congratulations on this messageboard - very interesting and well written. Liz x
Posted by: Liz | September 30, 2006 09:48 AM