A young person with MS asked for advice about how to cope with having multiple sclerosis–this was my answer:
Let me say first that I appreciate and agree with much of what has already been answered; however, I am going to give you a more hopeful answer, based on 26 years of living with this disease. I was on all the ABC-R medications, but continued to get steadily worse. By the time I had it for 10 years, it was evident that it was primary progressive multiple sclerosis by the intensity of the symptoms.
I had a plastic brace the length of my right leg, numbness in arms and legs, used a four-point cane, and needed a wheelchair for anything like flying and going to the airport. If I ventured out to see sights like Las Vegas, I was able to see the sights only because kind relatives pushed me around in a wheelchair.
Then the beginning of what I now call my “functional healing” started when I found an experimental treatment my neurologist at Barrow Neurological Institute agreed to do with me involving steroids and cytoxan. The whole thing is too complex to describe here as it was concurrent with I say about twenty other alternative treatments. This whole mix of Western medicine, Eastern approaches and methods, and generally healthy things to do is described in a book I am writing which is called “Multiple Sclerosis Mission Remission: Healing MS Against All Odds.”
The critical thing to know is that I believe MS is probably due to a large number of converging factors. Make medicine your base and aid it with alternative methods that do no harm and can do a lot of good. I still have MS, but MS does not have me. At this time, I have no major symptoms after 26 years, but that does not mean you stop taking the medicine.
I continued to have Tysabri infusions every six weeks, am married, and have a full time private practice as a clinical psychologist. I started a new medication which is an infusion that you only have to take twice per year. The research on it is very promising and positive. It is called Ocrevus. I have a blog where I mostly interpret dreams, but now will also post sometimes about my book about my MS experience.
It is an overwhelming diagnosis. Give yourself time and develop whatever spirituality you have. Medicine + alternative approaches + good relationships + spirituality + meaningful work was my personal formula to functional healing. Some part of that might be part of your solution. My book is really about some ways of finding what is right for you which will be personally unique.