Went Downhill and Can't Get Back Up

I beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.

Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.

I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.

I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.

One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.

We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!

Good Grief, My MS Is Getting Worse

My tremors are increasing, my balance is worse, and I can barely lift my right leg. I'm getting worried. I had a 3-day course of Solumedrol, but nothing improved. My neuro increased my Klonopin, but that's not helping my tremors.

I've made up my mind, after talking to people at the Infusion Center and reading posts on my MS forum, that I'm going to tell my Neuro that I want to stop Betaseron and go on Tysabri. I've heard more people say they've had improvement than not on Tysabri. I don't know if he will go along with it. If he doesn't, I'm seriously thinking about trying to find an MS specialist. I really like my neuro, but I think he and I need to get more aggressive in my treatment.

I have an appointment with him the end of this month, so we shall see how it goes. Wish me luck.

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.