Updates 2002

6 January 2002

My arms are getting very weak and my legs are even weaker.  Tried to shovel some snow the other day.  It felt like my arms and legs were OK.  After a little bit, I could hardly stand up straight.  I guess my back is going also.  I'm still off the Ambien and sleeping well, naturally.  The next step is to quit smoking again.

26 January 2002

Still off the Ambien but having trouble sleeping.  I fall asleep OK and then wake a few hours later and can't back to sleep.  Noticed fatigue really kicks in after lunch.  The neurologist said to eat a small lunch.  I only have a burger and fries and it still kicks in big time.  A nap would feel great, but not at work.  I take an extra half pill of the Provigil which seems to take care of it.  My leg leg is starting to get as weak as my right.

1 February 2002

Went for the third treatment of Novantrone today.  So far no bad effects.  All I can do is hope it's working.  My feet hurt all the time.  Just the idea of sitting on the couch with my feet on the coffee table is painful.  Even just sitting they hurt.  My right toes catches a lot when I walk (stager).  I have to make sure I don't fall.  Sometimes, mainly in the late afternoon and evening, it's all I can do to step with my left leg and drag my right leg.  I've thought about getting a scoter, but once I do that, I'll rely on it too much and will then be unable to walk at all.  The scoter is coming, I know that, but I'll put it off as long as possible.  When I drive, I've taken to putting the car into neutral at stop lights in case my foot slips of the brake.  Most of the time, it feels like it will slip off.  Sometimes, it's hard to push the gas petal down to get up to speed.  I've started using voice dictation software (Dragon Dictate) at work.  I need to get used to it (and it well trained) before both hands give out.  The right hurts and is extremely weak after a day at work.  The left arm and hand are starting to catch up.  Both arms hurt and both hands burn/cold all the time.  Wouldn't wish MS on my worst enemy.

3 March 2002

Both my hands and feet hurt all the time.  I was originally diagnosed with RR.  After only two years, I can see that was wrong.  The neurologist I had at the time, asked if I thought the attack was over.  Not knowing better, I said yes and he said you have RR.  It seems like I've been on a steady downhill run, or progressive.  My boss mentioned he's noticed the steady decline also.  Hell, what's in a label.

24 March 2002

Lately whenever I eat, my nose runs.  It may not be connected to MS, but it's sure strange.  I found out I can mail-order all my prescriptions through my health insurance.  It'll be less expensive and no more frequent trips to the drug store (just the mail box).

31 May 2002

Saw the neurologist.  He set me up for another MRI.  He wants to compare it to the last one and see if the Novantrone is working.  After that, I think I'll go on Betaseron.

29 June 2002

Got the results of the MRI.  No significant difference from the last one.  I guess that is good news.  Wonder why I feel (physically) that I'm getting much worse? 

25 August 2002

My right leg is catching up to my left.  Getting hard to walk.  Most times I use a cane because my left toe catches and I stumble.  This morning I got out of bed, took a few steps and my left leg suddenly collapsed.  The way I fell I was lucky I didn't break me leg.

30 August 2002

Sold my Corvette.  I loved that car.  It was getting hard to get in and out, I couldn't take care of it anymore, and my foot kept slipping off the brake.  MS takes everything away from you that you love/enjoy.  I got a PT Cruiser.  Easier to get in and out and my foot doesn't slip off  the brake.  When it's hard to move my right foot, I use the left for the brake.  Also, I'll be able to easily get a scooter or wheelchair in the back.  I've been falling a lot lately (once at work, once at the Chrysler dealer, and at home).  When I fell at home, I really hurt my left big toe (looks like I'll lose the nail).

11 October 2002

Saw the neurologist. He's starting me on Zanaflex for the muscle spasms in my stomach.  I real hope it works because I can't take too much more of this.  It "hurts" all day, every day.  I get no relief at all (even with large doses of Baclofen),  If it doesn't work, the doctor said Botox injections into the muscles of the stomach (every three months) might be the next step.  Also, going back on Avonex if my insurance company will pay for both (Novantrone and Avonex).  I've been having a lot of trouble getting my contacts in.  Also, I was having a real hard time getting use to bifocals.  I decided to have LASIK surgery with INTRALASE.  Everything is done by laser (including cutting the flaps).  It's very expensive, but worth it.  Had the LASIK surgery today.  It is truly amazing.  I can see as if I was wearing my contacts.  

19 October 2002

The Avonex was delivered yesterday.  After 104 weeks on it with about a year's break with only the Novantrone, I'll start the Avonex shots again this weekend and keep using the Novantrone.  The Zanaflex  seems to work, but it makes me tired.  The insurance company gave me a generic called Tizanidine.  The neurologist has me taking a half tab at night for a week, then one tab at night for a week, then two tabs a day.

8 November 20

The Tizanidine is not working.  I called the neurologist to see if I could get the daily dosage of Baclofen increased. He was more comfortable with increasing the daily dosage of Tizanidine because the Baclofen can cause permanent damage.   Even with the increase it doesn't work.  The spasticity in my stomach area just keeps getting worse.  I may start swimming to try and loosen up my legs.

13 November 2002

Over the weekend I fell down a bunch of times.  My legs got weaker and weaker.  It got to the point I couldn't move my right leg at all.  I could barely hold a fork in my right hand. I didn't make it to work this morning because I couldn't do more than drag my right leg.  As the day goes on it's getting a little better.  I went out a bought a scoter so I can at least make it into the office.  It breaks down into 3 pieces and fits into the PT Cruiser.  I'm also thinking about a walker for in the house.

18 November 2002

My legs were a little better over the weekend.  I didn't fall down.  Cindy is having a real hard time dealing with the falls and my cold hands and feet.  I called the neurologist about a week ago and said the Tizanidine wasn't helping.  He said to increase the dosage.  After a week of the increased dosage, I stopped taking the Tizanidine because it isn't any help at all (although it does help with a good nights sleep).  I see the neurologist Monday.