I have been on Betaseron for 2 1/2 years now. I don't think it's helping me, but my neuro is advising me to stay on it. The doctors say that without a DMD, you may get worse now or in the future. But, they can't prove it. So, my plan is to continue taking Betaseron until September. That will put me at the 3-year mark. Then, I will assess my situation and decide whether to discontinue it or keep taking it.
All the MS DMD's are injectibles, there is no pill form. I've been on three DMD's in my MS-life. The first was Avonex. Avonex is only taken once a week, but you have to inject it into a muscle in your thigh. I did it for a year, then I could do it no longer. To me, the needle kept looking longer and longer--until it looked like a damn railroad spike!
The second DMD I was on was Copaxone. I took Copaxone for five years. That is taken every day, the needle is short because it's given subcutaneously, and the side-effects were minimal. At the end of five years I felt it was doing me no good, so I stopped it.
There is also Tysabri, which is a once-a-month IV infusion. There have been deaths related to it, there is no way I would take it.
Betaseron is an every-other-day injection, and it's done subcutaneously. With my next shipment in Feb., I will receive the new syringes that have a much thinner needle. That will be nice!
Arnie now gives me the Betaseron injections. Due to my MS tremors, I was finding it harder and harder to do the injection myself. I use what's called an Autoject, which is a device that you cock and insert the syringe into. You press it to the site you want to inject, then you push a button and the Autoject does the injection for you. The last time I tried an injection myself, when I went to remove the needle from my arm my hand jerked and the needle cut my arm. It was then that I took a 2-week break, and then asked my husband to start doing my injections for me.
My husband cannot stand the sight of needles. He is what we call a needle weenie. However, with the way my injections are done, he never has to see the needle. It took a little bit of time, but he has become a great injector.
Tuesday, January 20, 2009
Monday, January 19, 2009
Introduction To My Disease
This blog is going to be about me and MS (multiple sclerosis). I was diagnosed with MS in the early 1990's, shortly after my husband and I were married. So, he has been through the entire experience with me. Arnie is an amazing husband, friend, and caregiver.
The first symptom appeared as numbness. One day I woke up to find that I was numb on my right side, completely numb. It was like someone had drawn a line down the middle of my body, even the right side of my tongue was numb. A lot of tests were run and two neurologists told me that nothing was wrong with me, that it was all in my head. Finally, I found a doctor who would listen to me. He watched my progress and then sent me for yet another MRI scan. With that, I got the diagnosis of multiple sclerosis.
The years passed. I began to lose my balance more and fall more. My arms got weak, then my legs got weak. I had to start using a rollator (a walker with four wheels) or two forearm crutches to ambulate.
Four years ago I found out about St. Francis Service Dogs, and I applied for a service dog. (See azoyizes.blogspot.com for Montana/Monty stories.) One year ago, I was matched with Montana. He has changed my life, and I love him to pieces.
In October, I developed optic neuritis in my left eye. My ophthalmologist (I've since gotten a new one) diagnosed my problem as dry eye. One month later, I had 48 hours of intense pain and blurriness in my left eye. It was then that I was told I had optic neuritis. In December, my neurologist prescribed a 3-day course of IV Solumedrol (steroids). That cleared up the blurriness for the most part, and the pain.
In December, I developed tremors in my entire body. It became hard for me to even feed myself. I did some online research and found out that they have weighted cutlery, so I ordered a soup spoon, a teaspoon, a knife and a fork. They help. I also discovered that if you use wrist and ankle weights, they will help control your tremors. So, I ordered 1.5 lb weights for my wrists and 2.5 lb weights for my ankles. They also help.
I am determined to keep walking as long as possible. Don't get me wrong, this disease kicks my butt sometimes and gets me down. But, you have to get back up and keep going. I do that with the help of Arnie and Montana.
The first symptom appeared as numbness. One day I woke up to find that I was numb on my right side, completely numb. It was like someone had drawn a line down the middle of my body, even the right side of my tongue was numb. A lot of tests were run and two neurologists told me that nothing was wrong with me, that it was all in my head. Finally, I found a doctor who would listen to me. He watched my progress and then sent me for yet another MRI scan. With that, I got the diagnosis of multiple sclerosis.
The years passed. I began to lose my balance more and fall more. My arms got weak, then my legs got weak. I had to start using a rollator (a walker with four wheels) or two forearm crutches to ambulate.
Four years ago I found out about St. Francis Service Dogs, and I applied for a service dog. (See azoyizes.blogspot.com for Montana/Monty stories.) One year ago, I was matched with Montana. He has changed my life, and I love him to pieces.
In October, I developed optic neuritis in my left eye. My ophthalmologist (I've since gotten a new one) diagnosed my problem as dry eye. One month later, I had 48 hours of intense pain and blurriness in my left eye. It was then that I was told I had optic neuritis. In December, my neurologist prescribed a 3-day course of IV Solumedrol (steroids). That cleared up the blurriness for the most part, and the pain.
In December, I developed tremors in my entire body. It became hard for me to even feed myself. I did some online research and found out that they have weighted cutlery, so I ordered a soup spoon, a teaspoon, a knife and a fork. They help. I also discovered that if you use wrist and ankle weights, they will help control your tremors. So, I ordered 1.5 lb weights for my wrists and 2.5 lb weights for my ankles. They also help.
I am determined to keep walking as long as possible. Don't get me wrong, this disease kicks my butt sometimes and gets me down. But, you have to get back up and keep going. I do that with the help of Arnie and Montana.
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