My Story

 How Different An Outcome Can Be

I want to share two very compelling stories with you that are too close for comfort in similarities, but have two completely different outcomes. Two women living in the same town around the same age are both diagnosed with Multiple Sclerosis within a couple of months of each other. Each had lesions mainly in the neck, down the spinal cord, and just a few in their brain. They were told they each had an aggressive form of MS and would be very difficult to treat. At that time there were only a couple of choices of medication which were FDA approved but were very similar to what they did. The only difference at this point was one lady stayed with a local Neurologist and the other went out of town to a MS Specialist/Researcher.

Both ladies followed their doctor’s instructions and took medication as prescribed but really didn’t do anything “extra” to help prevent progression. Unfortunately, both didn’t respond to the treatment and their MS started spiraling out of control. Their stories continue to be similar as they begin having trouble walking, dropping things from their hands, increase pain and muscle spasms, and decreased sensations in arms and legs. It was almost like mirror images as they go from walking with a cane to using a walker then moving on to a wheelchair. Next was the loss of bladder and bowel control, difficulty swallowing, slurred speech, and cognitive decline. Each lady was needing assistance with normal activities of daily living at this point. Then came the dreaded conversation with their physicians that neither was responding to the medication and there was nothing else that could be done. This is where the story becomes very different!

The lady seeing the MS Specialist receives a call not to long after that conversation took place stating she needed to get to his office as soon as possible. She arrives at this appointment within a week of the phone call to learn that her doctor has just gotten back from a World Wide MS Organization meeting that was held in Europe. There he had met with other MS Specialists and learned about a drug that they were using and having great success with. After learning how to administer this medication and the doses, time frames of administration, and other tips to help with the side effects, he had brought home this information and was ready to give it his patient. This medication was considered experimental here in the U.S. because of it not being FDA approved for treatment for MS. It was however FDA approved for another treatment, Lymphoma and Multiple Myeloma, so it was available for purchase and easily accessible. At the time this drug was called CAMPATH, now known as Lemtrada. So this fortunate woman started treatment within a week of the office visit and it was given every day for 5 days. She went on to actually receive 5 total treatments; one every year for 3 years then went 4 years without needing additional treatments, then received the last 2 a year apart. The other woman wasn’t as lucky. She continued to deteriorate ending up in a nursing home where she lived for 2 additional years before dying.

The woman who took Campath, aka Lemtrada ended up making it out of the wheelchair and walking on her own 4 miles a day along with regaining all her strength, cognitive function, control of bladder and bowels and becoming almost the person she was pre-MS. This extremely lucky woman is me. If I had not taken the chance on an experimental medication, I know in my heart I would NOT BE HERE TODAY. This medication gave me a second chance of life! What I did next was change how I lived each and every day. It became very clear to me that taking medication will only take you so far; I needed to do the rest. This change came with reading everything I could get my hands on about this disease not just relying on what the doctor ordered. It became extremely clear that MS is an auto-immune disorder so I needed to improve my immune system. Everything I read said eating a healthy diet which included lean meats and fish along with a lot of fresh vegetables and fruits was necessary. Then a routine exercise program was necessary to build up my muscles. I had lost so much muscle function while in the wheelchair from lack of use. Adding a multi-vitamin was also suggested to make sure I was getting all the vitamins that my diet didn’t support. Looking at me now, you would never know how bad I once was.

Yes, I still have relapses but fortunately they are very few since starting Gilenya. The side effects of this drug for me are so tough that to tolerate this medication, I can only take it every other day; but I DO TAKE IT. I have some form of exercise 5-6 days a week; mainly aquatic cardio, water Pilates, and just plain walking. I have dropped over 120 lbs., from all the weight I gained from steroids, muscle relaxers, and pain medication. No more cholesterol or high blood pressure medication required now and no longer pre-diabetic. Yes, there are days I would rather stay on the cough instead of going to the gym but I have an electric wheelchair sitting here in my house to remind me why I can’t do that. Once upon a time, I had made a promise to myself that if I ever got out of the wheelchair, it would take a major act of God to put me back in it; that is a promise I plan on keeping.

I am telling you this story because if you are the one who has stopped taking your medication because of side effects, or satisfied just to take medications but do nothing else, or the unlucky one that has been told that nothing else can be done for you; THERE IS OTHER POSSIBILITIES OUT THERE! Don’t give up or be satisfied with where you are. Get determined to change your future. Be willing to try new things because you never know what it is that will improve your MS.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.