New Script

Last week I started taking 4-amino pyridine in a slow release formula. I had high hopes but it wasn't working. Today I called the compounding pharmacy back to refill my original script. Unfortunately, the slow release wasn't giving me enough oomph to get through the day. On Saturday I fell 3 times! I don't need to have it working while I'm sleeping. Oh well.

Balance

The biggest improvement that I am noticing lately is my balance. Up until about a month ago I don't think I had any balance improvement. Then I started to suspect that it might be getting better and finally about a week ago I decided that it definitely is better. A few minutes ago I stood on one leg, put my other out behind me and stood, totally still. No problem!! I also walked from one room to the other while looking at the ceiling. I wouldn't have attempted this not too long ago. (I can't believe the cobwebs on my ceiling!)

I still have not had a menstrual period but I also no longer have hot flashes. My hormones must still be going crazy, though, since I am breaking out like a teenager. My hair is growing like crazy and I have to admit that I think I'm liking it. It's curly and kind of cute. I have people asking me where I have it permed!

I'm just feeling really good in general. Last weekend Andy and I went out to celebrate my 44th (gulp) birthday and I had a blast! We even danced and I didn't fall. I've been doing tons of yard work and even a little work on the boat.

I've had a few people call me with questions about the treatment since they are going to try it. My advice to you all is this: Hang in there. It's worth it!! I'm living proof!!

Hair

I was asked to post a photo of my hair growth since losing it. I'm going to try to post one now.

There isn't a whole lot to mention except that I'm feeling great. I'm amazed at how quickly I recover from wearing myself out. I'm walking straighter than ever and a lot of the time I'm almost walking normally. I love it!! I've been on my bike almost every day and I am trying to get into some kind of healthy aerobic condition. It's been a long time. My legs burn a little but I keep going. I also don't have to keep stopping to reposition my left foot on the pedal. Last year at this time I couldn't even keep my foot on the pedal without great effort.

Bottom line: I'm continuing to improve!!

Some Thoughts

I'm just sitting here reading some of my older posts from when I was in the hospital. After reading things about being able to lift my toes for the first time in years, sit up in bed without help etc. it's dawned on me just how much I'm already taking for granted. I've been able to do so much more for several months now that I forget how far I've come!! It's a good feeling.

Also, I didn't mention in my last entry that I haven't gotten my period since September. I guess it's menopause. My hair is getting longer by the day and it's ultra thick. Things are good!

Back from Chicago

I saw Dr. Balabanov yesterday. He said there is NO CHANGE between the MRIs from November 2008 and January 2010!! I'm extremely pleased and he was too. He was very pleased with my progress in general, in fact. I had left the house at 4 30 AM and was sitting for hours and hours so I was in rough shape when I got there. But, despite the lack of exercise, he still thought my strength was good. I made the trip alone this time and had no problem navigating the airports on my own even though I was completely exhausted.

As I was leaving his office I heard someone call my name and it was the husband of the woman I got to be friends with while at Rush! She was seeing Dr. B the same day! It was great to see her.

I'm feeling really good in general and love being back to work. I worked 3 days in a row last week and had no problems. I'm working 4 days next week and am not at all nervous about it. About a month ago I got a puppy and she is keeping me active. I have no problem getting up in the morning to take her out. I admit that I was nervous about it.

I had all sorts of things to mention but I can't think of anything that seems important. The bottom line is that I'm getting better.

Next Chicago Trip

Yesterday I got a call from Dr. Balabanov's office saying that I need to go see him in February. Cory said that he feels strongly that I follow up with him instead of my local doctor. So, I booked the flight this morning. I will go out and return on February 17th. I will see Dr. B and Dr. Stewart. Aside from this there isn't much else to say. I continue to improve and am looking forward to a new and improved 2010! Happy New Year!

Doctor Visit

On Thursday morning I decided that it was time to see my local neurologist. They got me in that afternoon. I wanted to show him my progress and also talk about CCSVI which I had heard about a few days before. It stands for chronic cerebrospinal venous insufficiency. I guess the theory is that there are blockages in the veins that don't allow proper drainage of certain substances and that this is the cause of MS. I admit that I haven't done a ton of reading about it but I'm curious enough that I wanted his opinion on it. He said it's just a theory but mentioned a study that is going on in Buffalo. I meant to get info about the study from him but forgot to. It's an interesting theory to say the least.

His nurse asked me how I'm doing in general after the chemo and I only had positive comments. She asked me why I thought that this treatment isn't availabe to everyone. She said that, in her opinion, the low dose, monthly chemo treatments aren't helping his patients. I told her that Dr. Balabanov said that treating MS with chemo in that way is like cutting hair. It makes it short for a while but it just grows back. She asked me to tell him that. I didn't since I had mentioned it to him before. I think he's quite skeptical about this.


During my exam I neglected to ask him if I could do the strength portion last. Once I exert myself it takes several minutes to get back to normal so when I was asked to run my left heel along my right shin I couldn't do it. I left feeling like he was none too impressed. I did say to him after the exam that I wished he could have seen me walking around the waiting room. Oh well. I got a couple of refills and made another appointment for 6 months from now.

Still no monthly period. My hair is growing out of control in all the wrong places but I have amazing energy, still. That's about it for now.