1 January 2004

Taking the maximum dosage of Baclofen and the maximum dosage of Tizanidine (Zanaflex).  My stomach area is till very uncomfortable almost all the time.  Walking is getting very difficult.  I tend to fall down more often.  At night I can barely make it from one side of the house to the other.

7 April 2004

Saw the neurologist once again.  We had previously discussed a Baclofen pump and changing from Avonex to another drug.  I thought about it for a few months and was getting really tired of the spasticity around my stomach.  It's there 24/7 with no real relief.  The thing I don't like about the pump is it requires surgery to implant, injections periodically to refill the drug reservoir, and surgery every few years to replace the battery.  I told him I'd like to take the test (Baclofen injection directly into the spine to see if the body can handle the drug) to see if I was a possible candidate for the pump.  He did another physical and said he didn't think I was a candidate for the pump.  He said it was really meant for people whose legs were very stiff (like a board).  I still have a fair amount of movement.  Instead he prescribed Lidacaine patches and a leg brace.  The patches help somewhat.  Any relief is welcome.  The brace helps my walking, what very little I do.  I have what's referred to as drop-foot.  My toes drag when I take a step.  Also, I decided to start with Rebif in place of Avonex.  Three shots a week, but the needle is much, much, much smaller.

15 May 2004

For the last week, I've been more concerned that usual.  The fatigue kicks in really hard in the morning about 7:30 and then again in the afternoon about 3:30.  In the afternoon, I can hardly make it from the office to my car.  I've had to have help putting the scoter away.  On a side note, I've ordered a mechanical arm to lift the scoter out of the car and back in.  When I get home, I can't even make it into the house.  Cindy has had to help me and then wheels me in the walker from room to room.

28 May 2004

The neurologist said to increase the Provigil dosage to help with the fatigue.  I'm now at the  maximum daily dosage.  It helps in the evening, but not in the morning.  Just have to tough it out.  When the fatigue hits my legs get very weak and I can't walk.  The brace I got works good, but the fatigue makes it useless.  Also, I've noticed my eyesight seems to be effected more, but bearable at this point. 

6 June 2004

Having real problems with the fatigue.  As an added benefit, I now also have problems with swallowing.  Normally I drink a glass of water and kind of gulp in down.  With the fatigue going full blast it's different.  After each swallow, big or small, I have to stop and catch my breath.  Kind of like when you come up from under water after holding your breath.  The Rebif is going well.  Compared with the needle for Avonex, the needle for Rebif is no problem.  Also, the auto-inject makes it very easy.

8 June 2004

Saw the neurologist.  We're going to try Ritalin for the fatigue.  A few times the fatigue really knocked me out.  The first time, I was just coming home from work.  I barely made it into the house and fell.  I thought I would just sit and rest awhile.  I'm not sure how much latter it was, but Cindy (doing yard work) found me on the floor and woke me.  The second time, I was going to the bedroom (using the walker) to lay down.  I didn't make it and hit the floor.  Cindy found me again.  Scared the hell out of her - thought I was dead.  The last time Cindy found me at the computer.  She called me and then had to shake me before I woke up - scared her again.  That time I kept nodding out and was going to lay down.  I just wanted to turn off the computer,  I did shut down the computer, but before I could shut off the monitor - I was out.

18 June 2004

The drug store I use has been unable to get the Ritalin.  I had to get it from another drug store.  I found out the hard way that when I'm nodding, I bite my tongue.  Also, my voice gets very horse (like I've been yelling for hours).  More MS joys.  The Lidacaine patches are working.  The spasticity discomfort in my stomach area is not as bad as it used to be.  Still there but not as intense.

18 July 2004

The Ritalin doesn't work much better than the Provigil.  I still nod-off but not as severely.  You have to get the Ritalin from a drug store every 30 days (rather than a 90 day supply from the insurance company) because it's a controlled substance.  I decided to go with the Provigil

28 July 2004

Had a real scare yesterday.  When I got home from work (left a little early), I could barley move.  It took Cindy and I almost an hour to get from the car in the garage, up three small steps, and into the house.  By the time I was in and laying flat on my back just inside the door, I could barely move.  I didn't even have enough strength to sit up.  Eventually, I managed to climb into a chair and from there to the sit in the walker.  I spent the rest of the day in bed (which was a choir to get into).  Slowly my strength came back.  The only thing I can think is I got overheated.  It was hot when I was putting the scoter into the car (by the time I finished that I could barely walk) and the car was like an oven inside.

31 July 2004

Noticed the weakness is not from over-heating.  As the fatigue kicks in I get very weak.

1 August 2004

Well I have another incurable disease to add to my collection (3).  I now have Psoriasis on my right ear.  The doctor said it is from the autoimmune system.  The big one is MS (autoimmune?).  The third is Lichen Planus, also autoimmune.

21 August 2004

Had one of the worst days yet.  I fell in the bathroom at work and someone picked me up and helped me back into the scoter.  The only good thing about it was I was the first to use the bathroom that morning so it was clean.  The fatigue had kicked in full blast and I could barely stand.

28 August 2004

A guy I work with gave me this (Pill Drill) the other day.  If you take a lot of pills, who with MS doesn't, it's  funny.