Updates 2001

18 January 2001

My tongue (right side) has been bothering me for a while.  It feels like I bit it, but I know I didn't.  The dentist looked at it and said nothing was wrong.  It makes it difficult to eat sometimes.  Even toothpaste and non-spicy food (e.g., cookie) burns.  Also, I woke up the other day and my right knee was very sore.  It got worse as the day went on.  I got to the point I could hardly stand, much less walk.  In the evening it started to ease up.  I put a heating pad on it and two days later it was OK.

15 March 2001

Having trouble with my vision,  It gets blurry which makes it hard to see (e.g., computer work).  The spasticity in my stomach is getting worse.  I get no relieve all day.  I've started taking 1 1/2 Baclofen twice during the day and 2 in the evening.  I still don't get relieve.  I see the neurologist in a few weeks.  Maybe he can give me something.  Started getting bouts of fatigue.  I get so "tired" I can barely keep my eyes open.  My feet (especially the left) get kind of sore.  It's impossible to find a comfortable position.  Even sitting with my feet up doesn't work (the spasticity kicks in worse).  Also, my wrist and tongue continue to bother me.  Still taking Ambien to sleep.  My arms are getting weak just like my legs.  Occasionally I get muscle twitches in my legs.

1 April 2001

The spasticity is getting real bad.  I have to take 2 to 3 Baclofen to get some relieve.  My left hand is getting that numb cold feeling.  Walking is getting harder.  More like a stumbling than a walk.  See the neurologist on the 4^th.  

4 April 2001

Saw the neurologist.  He changed two medications.  He said Detrol was for needing to go too often.  I have the opposite problem (needing to go and can't).  He put me on Urecholine.  For fatigue he put me on Amantadine, instead of Aminopyridine (he never heard of it).  The first day I took Amantadine I felt horrible.  It gave me that hung-over feeling, only 100 times worse.  All day at work I was on the edge of passing out.  I would be working on something and "wake up" not knowing what I was doing.  I stopped taking them.  He has me going for another MRI.  He wants to compare the first with the second.  He may want to put me on Betaseron instead of Avonex.  He had me go to a physical therapist to see if they cold help my "walk".  

14 April 2001

Saw the physical therapist.  She ran some tests and found my balance was below normal.  She suggested some exercises and visits twice a week.  I'll try it for three weeks to see if it helps.  Spoke with my sister (nurse practitioner and my brother-in-law (has MS).  They both strongly recommended Novantrone (a chemotherapy drug that slows/stops the progression of MS).  My brother-in-law also suggested Provigil for fatigue.  He said it works very well for him.  I'll call the neurologist this week and try to get on both.

27 April 2001

The neurologist said I don't need Novantrone yet (heavy duty chemo).  Still going to physical therapy.  I don't think it's helping.  I think I had another attack.  My left arm, and the right more than it was, feels numb and very weak.  At first I thought it was from the heat, but I don't think so.  It feels worse after a week.  Also fatigue is really kicking in.  Most times, the Provigil works during the day, but I can hardly keep my eyes open in the evening.  Lately, I have to take more Ambien to get to sleep.  Even with it, I wake during the night and can't get back to sleep without taking more.  I just feel horrible.

29 April 2001

The last three days fatigue has been kicking in big time, all day.  I can't think clearly, I don't think I can drive like this.  How do I get to work?  How do I work?  Called the neurologist a few days ago and he said I could take two Provigil, but it doesn't help at all.  What am I going to do?  How will we live?  Told Cindy what's going on and she is worried sick.  Decided to call the boss and tell him (already knows I have MS).

1 May 2001

Having another attack.  On another round of IV steroids.  On the second day.  Feel slightly better but still no hope.  Also need periodontal surgery.  Also may have mouth cancer (my tongue is very sensitive to anything, even toothpaste).  Had biopsies taken the other day.  Get the results soon.  The fun never stops.

5 May 2001

The last attack really hit me hard.  Both my arms and hands are now very weak. My right leg really drags.  Can't clear my head.  I can't sleep, even with Ambien.  I get up to use the rest room and can't get back to sleep.  I've gotten only about two hours sleep a night in the past week.  I could handle the physical parts, but not the ability to think clearly.  I've always said I was more concerned with the quality of life not the quantity.  Took two weeks off work to try and recover.

11 May 2001

Got the results of the biopsies.  Good news, it's not cancer.  It's Lichen-Planus.  No cure.  I think I will eventually need a motorized cart to get around work.  As long as I can walk, I'll stay away from the cart.

3 June 2001

It's been about two years since I was diagnosed with MS.  It has been a long down-hill slide.  I'll recap where I am physically.  Fatigue is getting worse.  At times it makes it hard to think clearly.  I have a constant ringing in my ears.  When I lay down I can hear my heart beat.  My vision gets bad at times.  So far it has always come back.  My left arm and hand are getting very weak.  Both my hands seem to always want to ball into a kind of fist.  My right arm and hand continue to get weak.  The spasticity is getting worse.  I'm in constant discomfort.  It is getting very hard to walk.  Both legs are getting very weak.  At times it's impossible to straighten my legs.  The knees always seem to want to bend.  My feet are always uncomfortable.  It doesn't matter if I'm sitting, standing, or laying down.  My balance is getting worse.  I don't think a motorized cart is far off.

11 August 2001

Saw the neurologist.  My legs and arms are much weaker.  My "walk" is more of a stager.  He thinks I'm into progressive MS.  After about 90 weeks of being on Avonex, I'm switching to Novantrone, a chemo-therapy drug.  My left arm is always sore and my right tires very easily.  He says I can't take Avonex and Novantrone at the same time.  The oncologist says I can I'll have to get them to talk to each other.  A break from the shots is nice anyway.

19 November 2001

My legs and arms are much weaker.  My leg really drags.  It's hard to take a step.  At the end of the day, I can barely make it back to the car.  I'm trying to ride an exercise bike everyday, at least a half-mile.  It seems to help a little.  My left arm is sore all the time.  It makes it very hard to use a keyboard.   After work my right hand is so tired, I can barely hold a fork.  At work I've gone from using a mouse, to a track-ball, to a touch-pad.  I'm going to try voice dictation software so I don't have to use the keyboard or "mouse" as much.  Hopefully, it'll help.  Had the second  Novantrone treatment last week.  So far so good.  Trying to get the neurologist to talk to the oncologist about using Novantrone and Avonex at the same time.  The oncologist says it's not a problem.  The neurologist says you can't use both at the same time.  My sister, a nurse-practitioner in an oncologist's office, says you can take both, my brother-in-law is.  People in a support group say they take both.  Both my hands continue to ball into a kind of fist all the time. At night, I make a conscious effort to stick them under the pillow to keep them straight.  The spasticity is getting worse, especially in the evening.  My memory continues to get worse, especially with names.  Still taking Ambien.  I think I'm addicted to it now.  Somewhere along the line, I started smoking again.  I'll try to quit smoking then try to quit the  Ambien.  Also, taking fiber pills everyday, to try and keep things moving.  The fun never stops.

 2 December 2001

Saw the neurologist.  He's putting me on Neurontin for the tightness in my stomach.  Neurontin is used in multiple sclerosis to control dysesthesias (pain caused by MS lesions) and the pain caused by spasticity.  It's working very well.  For the first time I get relief.  I feel better than I've felt since this nightmare started.  Trying to exercise (a half mile on an exercise bike) a little everyday and a rubber ball for exercising my hands.  I was very seriously considering a medical retirement.  Financially, we could just make it without having to give up much.  Now I'm thinking I may make it to retirement - nine years (or at lease a few more years). I also decided to wait on the voice dictation software.   Can one pill make all the difference?

31 December 2001

I've been sleeping without Ambien for over a week now.  Some nights I only get an hour or two of sleep and my arms and legs are very weak.  Other nights, I sleep well and my arms and legs feel better.  Got a letter from the neurologist.  He said: At the recent Congress of European Treatment and Research in MS in September, Dr. Jeffrey, from the Wake Forest School of Medicine, presented data regarding 10 patients treated with Mitoxantrone (Novantrone) and Betaseron.  New enhancing lesions were suppressed.  The combination therapy involves a lower dose of Mitoxantrone."  I can start the combination treatment.  I don't like the idea of a needle every two days.  I'll have to look into an auto-injection.