My Story...So Far

I feel this blog will be a good way for me to keep track of all I am learning about ways to help multiple sclerosis and provide a way to share those things with others who are interested.

I am not a doctor, I am not a nutritionist or herbalist, I am just a girl who is passionate about stopping the progression of this disease.I welcome comments and advise. I hope to never miss out on an opportunity to learn.

My first introduction to multiple sclerosis came when I was quite young. My Aunt Wendy was diagnosed when I was probably 8. I didn't understand completely but watched over the years as her abilities, both physical and mental, declined. After a divorce and really nowhere else to go, because she couldn't work enough to make a living, she came to live with us, by then I was in high school, she was still walking and I would watch her push her sitting walker around the block day after day, resting every 20 feet or so, trying to stay cool with neck wraps, but determined to keep the abilities she had left. Depression was a big problem and though we loved her, there were times that it was hard to enjoy her.

She remarried and has a husband who it doing his best, but also has health problems. About 4 years ago she fell and broke her ankle, this left her in a wheelchair. She is currently in a nursing home, too weak to put any weight on her legs, but as sweet as anyone could be in her situation.

She tried lots of things over the years, but because the internet was not as available as it is now, she did not learn the things that I am learning. Several years of Avonex, a low fat diet, blue green algae and even Reliv didn't seem to slow the progression.

In March of 2009, I moved my young family just 30 miles south. The move was very stressful for me. I felt like I was doing everything on my own. Curtis, my husband, worked a lot and commuted a lot and I didn't know how to ask for help when I needed it. I would try to pack during the day while Curtis was a work and I had no energy. I remember calling him one day, laying on the ground crying because I just didn't have the energy to do anything else. I hated that feeling and didn't understand it, but I carried on.

Our new house isn't too far from the railroad tracks and the noise of the train, stress or moving and worrying about whether we bought the right house left me with over 2 weeks of sleepless nights. Even after I started sleeping through the night I still couldn't get over that exhaustion. Because I felt so tired, I went to the doctor for help. He check my thyroid and iron levels and said everything was just fine. Well I didn't feel fine! While I was helping Curtis trim a tree, I closed one eye because of the bright sun and noticed that my left eye was blurry. I did research on the internet and decided I really needed to see an eye doctor. He was pretty sure it was optic neuritis and advised that I see a neurologist, because of the possibility of it being MS.

After debating, mostly because of the cost of an MRI, I saw the neurologist and my MRI showed several lesions. He said he is 95% certain that multiple sclerosis will be the diagnosis, but it is only confirmed when I have a second exacerbation. I took this head-on determined to never have another exacerbation.

Because I still want to have a couple more children and am currently trying to get pregnant, my neuro said that the disease-modifying drugs are not an option. I had watched my aunt take these medications without really being helped by them and already felt I wanted to approach it differently, though I had heard that there have been advances in the meds, still, ask anyone, these expensive drugs only slow the disease, if they do anything thing at all for certain individuals. If you base your treatment solely on these meds, you will continue to decline. My goal here is not to say stop taking them. If they are helping, that is wonderful, I just want to bring awareness to things you can do in addition to help in the whole process of being and living well.