My Life with MS

Well, I made my decision. I stopped my Copaxone shots. I am just tired of it and have chosen to put things in God's hands. I am not a religious person, but I am spiritual. If I had to classify myself, I would have to say I am agnostic. I am willing to take my chances with my beliefs. I really don't want anybody condemning me for them because they are mine.

Anyway, I am going to try and make some diet and exercise changes and see if things work. I would appreciate all good thoughts and prayers that are sent my way.

I will keep you posted on my progress.

Well, I'm considering stopping my MS meds. I have been on Copaxone for almost a year and I'm sick of it. I don't feel any better and it's burning up my insurance. At over $2600 a pop it's kind of ridiculous. They also have switched our mail order pharmacy again and they keep sending me some place else. Needless to say, I am sick of it all.

The only way for me to know if it is actually helping is to have another MRI. I have had 3 in the past 2 years and don't want another right now. I think sometimes it's better no knowing. I know Copaxone doesn't help with side effects, but I dont' feel I have ever fully recovered from the last exacerbation. My numbness has never subsided and it has gotten worse over the past 2 years.

Oh well, I'll have to let you know.

I try not to complain about having MS. I know sometimes I do, but dammit I am still mad. I am posting my profile statement from Patients Like Me. I just thought I would share some of my journey with you:

I was diagnosed with MS on 2/09/08 and I am dealing with it fairly well, I guess. I have been having symptoms for many years and just never knew what was wrong.

Well, I guess I try and fill in some of the details. I have had symptoms further back than I can remember. It's really hard telling when it started because neither myself nor doctors were listening. I have told my husband and doctors that "I'm much to young, to feel this old", from Garth Brooks song. I just figured I was a hypochondriac and blew off about everything. I've passed out in the shower a few time over the last couple of year, had numbness that I could chalk up to something else, I'm bipolar, and more things that I can name. Well everything came to a head on February 7th, 2008.

My 17 year old (now 19 and in college) is (was) a varsity basketball player (a pretty awesome one at that) and he had an away game on February 7th, 2008. Before the game I helped my 7 year old (almost 9) with his homework and noticed my right arm was numb. I had been leaning on it, so it was no big deal. Well, on the way to the game, I touched my right cheek and it was numb. I thought that was very odd, so I touched my leg, arm, neck, and so on. They were all numb on the right side. They could have split me down the middle. I called my husband and had him call him mom, who is a nurse, and see what the problem might be. She said pinched nerver or maybe a stroke. I told my hubby I would check it out after the game. After the game I was feeling worse and called my little sister, also a nurse, and she sternly told me to go to the ER. I knew something was wrong, so I didn't argue. Well, everything was going fine, but I was feeling worse. I was having trouble walking and talking and I was getting very scared. I was alone in the ER because I was 20 miles from home. The dr. did a CT scan and bloodwork. He was nice until the results came back. The CT was neg, but he found Xanax (prescribed) in my system. Even though they were normal levels, he decided that was the cause of my problem. He asked me if I needed him to call rehab and I just stared at him. He told me to go home and sleep it off and see my dr in the morning if I still felt bad. Then the male nurse came in and told me I could leave. I stood up to get my jacket and when I turned around my right leg stayed in place and my left leg wrapped around it. It crumpled to the floor in slow motion. The nursae looked at me and said, "Do I just need to call rehab for you?" I could believe my ears. I told him no, I just needed to leave. I sat in my truck in disbelief. Half way home I could no longer press my accelerator, so I drove with my left leg. The next day, I went to the dr and he put me in the hospital because he didn't know what was wrong with me. The next day, February 9th, I met my neurologist for what I though would be nothing, but a one time meeting. He ordered an MRI and changed my life forever.

I am currently working with my doctor to get him to prescribe LDN. He has been receptive and I am optimistic. (We tried and the doctor took me off it in March of 2009. I had some progression of the lesions and he wanted something more proven.)

I am (was) in my 6th quarter of college courses to obtain my accounting degree. (I completed the accounting degree and also received my degree in business finance. I also graduated with honors.) It has been a struggle since my attack, but I am (was) determined to do this.

I'm sorry this is so long, but I couldn't help it. Please excuse mistakes, my eyes are coming and going today.

I made some changes to update it, but that is it in a nutshell. I'm sure there are plenty of people who can relate to my story.

Link: http://astore.amazon.com/newwebmastert-20/detail/1448656699

I have met a lot of people in my time on the internet. I have made some of the best friends of my life in my adventures online. One of those special people is Carla Martin.

She, like me, suffers from MS. Carla has an 11 year old son named Caleb who has written a book about his mom having multiple sclerosis from his viewpoint. I was privileged to read the book and I am impressed. Caleb is very straight-forward in his book about his feelings towards MS and his mom.

You can buy the book today from Amazon.com right here.

http://astore.amazon.com/newwebmastert-20/detail/1448656699

My journey with Multiple Sclerosis was given a name on February 9, 2008. I am almost two years in and still have no defined route. I wish I could set my GPS and determine its destination. My true journey was underway long before my diagnosis.

All the things by themselves were little problems, but when looked at together they spelled disaster. Each case of MS is unique to the person living with it, mine is no exception. One of the causes of an exacerbation is stress. Try telling someone like me to not have stress is like telling a bird not to fly. I have always been a high stress person, but it is now my enemy.

This time of year is always stressful on me no matter how I try to reduce it. This year is even worse because I have my aunt to take care of. I have been doing my shopping as well as hers. I hate crowds and find myself developing extreme anger while shopping. All of those people everywhere is too much.

I have been fighting off an exacerbation for a couple of weeks now and I’m wondering if I will win. My numbness has gotten worse as well as my balance, memory, and cognition. My exhaustion level has dramatically increased and some days it seems unbearable. Nevertheless, I must persevere.