Welcome to the Beginner’s Guide to MS.
In this series, we will discuss various aspects of multiple sclerosis, MS diagnosis, MS symptoms, living with MS, MS-related healthcare, and more.At any time, if there is a topic which you would like covered, please feel free to drop me a note or leave a comment at the end of a post.I appreciate your feedback.
What were the first thoughts which came to mind when you were newly-diagnosed or not-yet-diagnosed - Will I die from MS or end up in a wheelchair? Is there a cure for MS? ** Terminal vs. Chronic**
A diagnosis of multiple sclerosis is unlike one for cancer. In breast cancer, for instance, the patient is able to "beat cancer" and live on free of that disease. MS can not be ‘beaten’ but the symptoms can be managed. This is one reason to have an excellent relationship with a neurologist who specializes in MS and encourages team participation in managing MS head-on.
Except in a very rare form of the disease which affects only 1% of all MS sufferers, multiple sclerosis is not a fatal disease. The MS patient has close to the same life-expectancy as does someone without MS. Please keep in mind, however, that the complications which come with having MS may contribute to an earlier decline in health. Again, stay with a good doctor and keep as active and healthy as possible.
We will address strategies to stay active and maintain overall health in future posts.
Wheelchair or Not
Statistically, only about 25% of persons with MS will need a wheelchair full-time. That means 75% of MS patients will not end up in a wheelchair. That’s really a comforting statistic.
For those who do need a wheelchair or scooter to get around, it is not that bad. If the time comes, I imagine that you will be happy to have one in order to stay active and involved with life. In fact, a scooter can be an excellent tool in maintaining a higher quality of life and staying independent …and it may actually be fun to maneuver.
Keep moving and exercising as much as you can. You are your own best asset in ‘fighting’ this disease.
Is there a cure?
No. But, the researchers are getting closer to findings ways of helping our bodies to repair themselves more easily. Specifically how to encourage myelin to grow in specific places of damage.
How do I know this? I have a friend who is a researcher studying remyelination of damaged nerves in Spinal Cord Injury. He assured me (in November) that they are getting closer and closer to solving this problem, which helps to alleviate my fears.
So please, fear not. MS is not a death sentence. To placate that MonSter under the bed, reach out to others. We all get scared sometimes, but we do not need to be alone in our fears.
Until next time, please be well.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.