My MS Journal

21 May 1999

I had been having trouble walking.  After some yard work, my leg got tired and would somewhat drag.  My balance was also a little less than it should be.  On 21 May 1999, I saw the doctor.  He prescribed some sleeping pills because I also mentioned I was having trouble sleeping.  However, I went back in a couple of days and convinced him to refer me to a neurologist (I was familiar with MS symptoms – my mother and brother-in-law have MS).  He set me up to see a neurologist on 1 June 1999 to do a nerve conductivity test.  The test was OK.  I went back and saw the doctor who set me up for an MRI on 22 June 1999.  On 24 June 1999, I got the results:

I had an important business trip the following week, so I decided to go.  By the end of week I was having real trouble.  My legs felt weak (the left worse than the right).  Both had a constant tingling/burning sensation.  I was having a difficult time urinating.

June 1999

I felt like I always had to go, and nothing would happen.  If I did manage to go, I really had to force myself.  One night it got so bad, I thought about going to the emergency room.  After about 5 hours, a pee never felt so good.  I would wake up two or three times at night to go, sometimes with success – most not.  I decided to skip the family doctor and see a urologist.

7 July 1999

On 7 July 1999, the urologist said my bladder was fine (emptying completely) and gave me some pills (FloMax).  After one night on the pills, they seemed to help with not being able to go.  I still got up twice during the night (and did go) and woke an hour early.  Either the pill or cumulative lack of sleep left me a little light headed.  I hired a company to do the yard work (cut the grass, trim the bushes, etc.)  I tried cutting the lawn (riding mower) the weekend before and my leg was exhausted from the brake/clutch pedal.  My brother-in-law (has progressive MS) said to stay out of the heat (something hard to do in Louisiana).  Took another FloMax, which didn’t work too well.  I felt like I had to go from about 10 PM to 1 AM and didn’t sleep.  Finally did about 1 AM.  I took a quarter of a sleeping pill that put me out, but woke up lightheaded.

8 July 1999

I decided I can sit home and vegetate or sit in the office, work, and get my mind off it.  My brother-in-law no longer works because of the MS (He walked a lot at work and had a lot of stress).  After thinking about it, I will keep working no matter how bad it gets.  The wife and I (no kids) have a very nice house on a lake.  We do not want to lose it.  Still having trouble urinating.  Lack of sleep is starting to take its toll.

9 July 1999

Still having trouble urinating, especially at night.  Spent most of the night awake – very tired.  Tingling sensation seems to be spreading to my hands and groin.  I feel very sorry for myself.

10 July 1999

Tried to go in the evening (took the pill about 7) and was not able to go until 9 (even thought I felt like I had to all evening).  Fell asleep fast, but woke twice to go and couldn’t.

25 July 1999

Been awhile since I wrote in this journal.  The urologist put me on Ditropan XL, which is supposed to tack care of the bladder spasms.  Seems to be working.  Both my legs are very numb and weak.  The neurologist gave me Amitriptyline that is supposed to take care of the burning sensation.  The Amitriptyline also helps me sleep at night.  It takes time to build up in my system.  I don’t know if it’s making the numbness seem worse.  Had a scare today.  My fingers have been a little numb and for a while it felt like my arms were going also.  The neurologist said my left eye nerve has been damaged slightly (a slower response time than the right).  I don’t notice the difference.  I decided I’ll cut the lawn myself and the yard company will keep doing the bushes.  The neurologist said it would be OK if I start about 8:00 AM (stay out of the heat).  I’ll cut one day and trim the next.

30 July 1999

Started massive doses of IV Steroids today (5 days in a row).  I’m numb from the toes to my stomach.  I think it’s spreading into my arms and head.  I don’t know how much longer I can stand it.  The numbness is so constant and intense it’s painful.  I need sleeping pills to sleep.  I think about suicide all the time.  I could do it, but what will happen to Cindy and my family?  Although she’s trying to be supportive, Cindy can’t take too much more.  Called a self-help group for newly diagnosed (in Shreveport).  The next meeting is Tuesday.  Nice people at the meeting, very helpful.

31 July 1999

This morning the intense numbness has lessened considerably.  I don’t know if it’s from the IV Steroids or the Amitriptyline, either way a blessing.  I could live like this.  Leave in a little while for the second IV Steroid treatment.