I was a healthy person, born in 1963, never getting sick, never catching bugs, even as a mom, when the kids brought home tons of colds and flues from school, I didn’t catch them, ever. I spent the first 32 years of my life incredibly healthy and energetic.
I was raising my 6 children preparing to adopt #7, and having a blast doing all that entailed (that was the greatest decade of my life). I’ll never forget the day in Sept. 1995, while making my bed, I stood up and had a dizzy spell. I had no idea what that was. I had heard of Vertigo and the dizziness that brought on, maybe this was vertigo I thought. As the day went on, I felt a flash of dizziness a few times more. It had my attention. It increased until instead of ‘bouts’ of dizziness, it was constant. As the day continued it seemed that my eyes were moving. I didn’t have a headache, I didn’t feel sick in any way, but I thought my eyes were moving.
I asked my husband, who as a state trooper and does ‘field sobriety tests’ for drunk driving, to look in my eyes and see if they were moving. He couldn’t see any movement. I had no idea what that meant. I knew that something was not right but if he couldn’t see my eyes move I wondered if I was losing my mind! I’d never heard of anything like it!
My friend drove me to the eye doctor. When he put his equipment up in front of my eyes he immediately saw that my eyes were moving. Rotary Nystagmus he said. http://www.medhelp.org
I was so relieved! I wasn’t crazy! I was smiling, practically laughing! The doctor brought me back from my excitement and said, “This is serious”. I honestly didn’t care! I wasn’t crazy! He told me it could be a brain tumor or Multiple Sclerosis. I said if it was a brain tumor, we’d cut it out, if it’s MS I’d learn what that is and deal with it. After testing, just three days and an MRI later, I was diagnosed with MS.
My mom looked online quickly and learned about the seriousness of the disease. She tried to teach me that MS is the immune system attacking the protective coating of the nerves. Because I was never sick, I didn’t believe it, I wouldn’t accept it. I didn’t even listen to what MS is.
At my first appointment with the neurologist, he told me that 5% of the people who are diagnosed with MS never have another symptom. 5% are on the other end go quickly into a wheelchair. I knew beyond a shadow of a doubt that I was in the first 5%. The doctor wanted me to get right on the MS drugs that had been recently FDA approved. Believing in natural remedies, I refused to get on the available pharmaceuticals and asked my Dr. if he knew of any alternatives. He told me of a Neurologist in Oregon, Doctor Swank, who believed that MS is connected to the saturated fat in our diet. I immediately flew to Oregon, saw Dr. Swank and started the Swank diet.
In Nov. 2000, my symptoms of tingly feet and hands and stumbling, were strong enough that I could no longer deny that I had MS. I returned to the neurologist and started my first MS drug, Avonex. That seemed to ignite the MS and I was slammed down with what I learned is an exacerbation. I was not able to get out of bed for days. I was given mega doses of IV steroids (solumedral) just as I had been given for the rotary nystagmus when I was diagnosed which calmed down the symptoms. I learned what relapsing-remitting MS is when less than a month later I had another exacerbation or attack.
During the attacks, I would have different parts of my brain (so my body) affected. One time I lost my speech (I sounded like a drunk woman), one time it was my hands (I wrote like a preschooler), but always it was my legs. Physical Therapy and Occupational therapy were able to get me back almost to the level I was at before the attack. Over the next 8 years, my body stopped responding to any pharmaceuticals (I tried them all) and I was going down. I wasn’t able to take care of myself and was looking into home health care when my mom found a test study at Johns Hopkins.
It was a chemo (Cytoxan), that was approved for cancer, but not yet approved for MS. The Cytoxan annihilated my immune system which was attacking the protective coating of my nerves (myelin sheath) and put the MS in remission. I followed the advice of the Doctors at Johns Hopkins and got right back on Copaxone in hopes to retrain my immune system. Unfortunately, when my immune system came back, it was still attacking my myelin. Three years of MRIs with no white spots (scars) should be something to celebrate but unfortunately the MS is still progressing. I’m using a walker that flips into a wheelchair. I bought a light weight walker that I can get in and out of the car and I can walk short distances anywhere that is handicap accessible. I’m on the pharmaceuticals, and as always, looking into alternative treatments. I’m looking again into heavy metal toxicity and other causes of this condition.
I look at the MS as a Bag of Gold (I haven’t always). I have learned incredible things about the worth of souls, health and nutrition, self-discipline, exercise, and more about medications than I ever wanted to learn. I’m determined to endure this condition with joy and grace.
I know we can enjoy life, no matter our external circumstances. It is what it is and I’m doing my best.
I’m grateful for this incredible blogging community where I can share the things that I’ve learned. It gives me an avenue to share, on a large scale, the lessons I’ve learned how to help and be helped by others.
I have honestly gone from having a strong opinion to no longer knowing. I used to believe that our bodies were created to be healthy, given the proper nutrition, life style (no drinking, drugs, emotional clearing, exercise, etc.) they would be healthy. I’m doing all of that, and I still have active MS. Now the only thing I know is God is in control, I am not. And I can choose to be happy. Linda Grace Cox
With a bachelors in Social Work, Linda is 56 years old happily married with eight children and a ton of grandkids. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has been certified as a life coach. She is dedicated to proving that joy can be chosen no matter what our individual circumstances are.. Linda is now working in the tourism industry in Alaska.