My name is Wayne, I am 51 years old and live in Portland Oregon, USA. I was dx sALS on 2/2/07, although I believe I've been living with this scurge for over ten years. I've had 2 EMG's from 2 different hospitals and have had a Spine MRI, x-rays, catscan, blood tests, and have been poked and probed just about everywhere one could imagine.

My sALS journey started with foot drop in my left foot. I attributed this to an ACL surgery that I had in 1996. I tried like heck to rehab it with physical therapy with no success. After several years of foot drop I began to develope a limp. My limp, un-noticed by me, slowly became more pronounced. I finally realized how bad it was when my friends pointed it out to me. About the same time I noticed that I was having fasciculations after working out or doing anything physically stressful. Also cramping began to become a real problem.

On 4/5/05 I went to see my physician who examined me and concluded that I should see a neurologist. My neurologist did all the tests and told me that I had motor neuron disease and possible ALS. He scheduled me for x-rays, scans, blood tests and physical therapy. After all these results he scheduled me for an EMG. My first EMG concluded that the left side of my body was working at about 30% of normal. I continued physical therapy for about 3 months with no improvements to my foot drop or muscle lose. At this time, only the left side of my body was showing signs of ALS.

I started taking vitamins E (400 iu), C (1000 mg - 2x), Beta Carotine (25000 iu - 2x) and Creatine (5 grams) daily. I also started taking apple cider vinegar tablets (600 mgs) daily for cramping which has worked wonders for me.

My ALSFRS-R score was 46.

About 6 months later, I made an appointment for a second opinion and was given the same diagnosis as the first. I then scheduled a third appointment at the Oregon Health & Science University. There I had another EMG and examination and was given a similar diagnosis, motor neuron disease, probable sALS. They said I should stay on my vitamins and see my neurologist on a regular basis.

About 3 months later I finally lost control of the muscles in my left knee. At that point I had a leg brace made, and that kept me mobile. My lower leg had atrophy, but my upper leg (quad) still had most of its strength.

I Started taking Rilutek around 2/2/07. Stopped after about 6 months because of side effects.

Feb 12 2008:

Now a year later my left leg has lost most of it's muscle mass and is barely useful. The leg brace that has keep me mobile, now feels like an anchor. I can still contract some muscles in my leg, both upper and in my calf. I can not curl or move my toes or ankle and have about 10% use in bending my leg back (knee bend). Bending my knee out (leg lift) is almost completely gone.

My left hand has lost almost all of the muscle mass between the thumb and index finger, the thumb pad and the bottom side and top of my hand.

My fingers:
Little and next fingers can curl in and out, but can not straighten completely out. Middle finger is in the best condition and can curl in and out and can almost straighten out. My Index finger can curl in and out but has no side to side function and dose not fully straighten out. My thumb can curl in and out at a very reduced range of motion. Side to side function is very limited and overall the thumb is severely week. Dexterity in my left hand is at best 5% to 10%.

My left arm has lost about 50% of the muscle mass. Most noticeable muscle loss is between the elbow down to the wrist. It still has a full range of motion, but has become more difficult to do every day tasks and is getting very weak. I would estimate that it is about 30% to 40% of normal.

My core strength has deterioated and is at about 40% to 50%.

I now feel the right side of my body getting weaker. My right leg is still functioning but is getting very week. I am now unable to climb stairs and need assistance when standing and walking. ( I'm a wall hugger for balance. ) The power/strength in my right leg has disappeared but the muscle mass is still there. I have a moderate amount of foot drop in my right foot and fasciculations are now happening on both sides of my body. The fasciculations in my left leg have slowed down to only a few every day.

I'm still able to get up from my chair but need the walls or walker to get around. For distances I am now using a wheel chair.

My ALSFRS-R score is now 37.

Weight Lose: current weight - 158 lbs up from 154 lbs on 8/14/07 but down from original 179 lbs on 11/29/04.

Other Observations:
Dry mouth at night. Strange salty taste in mouth. Hair is dryer and or coarse. Frequent urination. Nose runs every morning coupled with morning cough. Ears need to be cleaned almost every day. Skin feels drier. Palms have a oily/slimy feel some of the time. Legs/feet are always cold due to lose of circulation. Left wrist is usually cold due to lose of circulation. Severly increased emotions. Trouble sleeping more than a couple hours at a time.

April 1 2008:

I have now been on lithium for one month.

My ALSFRS-R score is now 37.

My lithium dosage was 150mg x 2 daily for 3 weeks and then increased to 150 mg x 3 daily.

My lithium blood level was 0. 3 mmol/L after 3 weeks.

Current weight: 160 lbs up from 158 lbs

Progression:
No noticeable change in my progression.

Side effects:
A few headaches during the first couple of weeks.
Some nausea during the first couple of weeks.
Noticable increase of fasciculations for 2 weeks and then again with dosage increase.
Increase of salty taste in mouth.
Huge increase in thirst.
Huge increase in urgency and frequency of urination!!!! This has been the worst side effect for me.

Improvements:
Some improvement in sleeping after 3 weeks ( 3 hour shifts instead of 2 hour shifts ) plus a huge increase in dreams.
Headache and neckache problems have almost totally gone away.
Yawing no longer causes a cramp in the back of my tongue.
The heavy / strange feeling in my chest that had me taking extra deep breaths has gone away.

Conclusion:
Some may say no major improvement, but I would say that I have experienced some small changes that have improved my quality of life, and for that I would say that my first month on lithium has been successful.

May 1 2008:

I have now been on lithium for two months.

My ALSFRS-R score is now 37.

My lithium dosage was increased to 150 mg x 4 daily.

My lithium blood level remains at 0. 3 mmol/L after two months.

Current weight: 160 lbs.

Progression:
No noticeable change in my progression.

Side effects:
Headaches with each increase of dosage. Only lasts a day or two.
Some nausea during increase of dosage.
Noticable increase of fasciculations with each dosage increase. Returns to pre-lithium level after 3 to 4 days.
Sleeping pattern changes with dosage change. After a few days it's back to about 3 hour shifts.
Salty taste in mouth remains the same.
Huge increase in thirst remains the same.
Huge increase in urgency and frequency of urination remains the same!!!!

Improvements:
Noticable small improvement in balance.
Improvements from first month remain the same.

Conclusion:
I have not noticed any progression in my condition and last months quality of life improvements have remained. For those reasons I would say that my second month on lithium has been successful.

June 1 2008:

I have now been on lithium for three months.

My ALSFRS-R score is now 36.

My lithium dosage remains at 150 mg x 4 daily.

My lithium blood level finally hit 0. 5 mmol/L .

Current weight: 160 lbs.

Progression:
Some noticeable change in my progression.
Left arm has lost muscle mass and is a little weaker.
Left hand has has a little more atrophy, noticeable in fingers.
Little finger on right hand is starting to show early signs of atrophy.
Right leg is feeling weaker. Because of this I am now doing sit down showers.
Noticeable change in my breathing when lying down.

Side effects:
Only a few headaches this month.
No nausea during this month.
Fasciculations have remained at pre-lithium levels.
Still battling the sleeping pattern changes. Some nights are ok while other nights are chopped up into many 1 hour and 1 1/2 hour sections.
Salty taste in mouth remains the same.
Huge increase in thirst remains the same.
Huge increase in urgency and frequency of urination remains the same!!!!

Improvements:
No new improvements.
Improvements from first month remain the same.

Conclusion:
I have noticed a small amount of progression in my condition. Previous months quality of life improvements have remained. This month has been a mixed bag of success and setback. Because of this I would say that my third month on lithium has been cautiously successful.

July 1 2008:

I have now been on lithium for four months.

My ALSFRS-R score is now 36.

My lithium dosage remains at 150 mg x 4 daily.

My lithium blood level remains at 0. 5 mmol/L .

Current weight: 160 lbs.

Progression:
Small noticeable change in my progression.
Left hand again shows signs of a little more atrophy, noticeable in fingers. Knuckles becoming sore.
Little finger on right hand has progressed slightly.
Right leg is still getting weaker. Feeling way less stable on my feet.
Foot drop in right foot has progressed to about 95% useless.
Breathing has remained the same as last month.
Still battling the sleep monster. Getting new bed this month. Hoping for some better sleep patterns. I'm tired.


Side effects:
Headaches remain at only a couple this month.
I've had a few days of nausea during this month.
Fasciculations have remained at pre-lithium levels.
Salty taste in mouth remains the same.
Huge increase in thirst remains the same.
Huge increase in urgency and frequency of urination remains the same!!!!

Improvements:
No new improvements.
Improvements from first month remain the same.

Conclusion:
Again, I have noticed a small amount of progression in my condition. Previous months quality of life improvements have remained. After only dropping 1 FRS point in 4 months, I would say that my fourth month on lithium has been cautiously successful.

August 1 2008:

I have now been on lithium for five months.

My ALSFRS-R score lost 1 point to 35.

My lithium dosage remains at 150 mg x 4 daily.

My lithium blood level remains at 0. 5 mmol/L .

Current weight: 160 lbs.

Progression:
Only small noticeable changes in my progression this last month.
Left hand knuckles still sore.
Little finger on right hand remains the same.
Right leg is still weak, but no noticable progression.
Right arm is slightly weaker than last month.
Foot drop in right foot is still about 95% useless.
Breathing has remained the same as last month.
Still battling insomnia. Falling asleep is easy, staying asleep seems to be impossible. Still tired.


Side effects:
No headaches this month.
Fasciculations have changed a little this month. Some areas have slowed down while other areas have increased.
Salty taste in mouth remains the same.
Huge increase in thirst remains the same.
Huge increase in urgency and frequency of urination remains the same!!!! I'm getting very tired of this side effect.

Improvements:
No new improvements.
Improvements from first month remain the same.

Conclusion:
I have noticed a small progression in my condition. Previous months quality of life improvements have remained. I have only dropped 2 FRS point in 5 months. I would say that my fifth month on lithium has been cautiously successful.

September 1 2008:

I have now been on lithium for six months.

My ALSFRS-R score remains at 35.

My lithium dosage remains at 150 mg x 4 daily.

My lithium blood level remains at 0. 5 mmol/L .

Current weight: 160 lbs.

Progression:
Only small noticeable changes in my progression this last month.
Left hand knuckles still sore.
Little finger on right hand remains the same.
Right leg is still weak, but still no noticable progression.
Small progression in my right arm and shoulder.
Foot drop in right foot is now 100%.
Breathing has remained the same as last month.
Still battling insomnia. Falling asleep is easy, staying asleep is tough.


Side effects:
No headaches this month.
Fasciculations have remained the same this month.
Salty taste in mouth remains the same.
Huge increase in thirst remains the same.
Huge increase in urgency and frequency of urination remains the same!!!! This is by far the worst side effect.

Improvements:
No new improvements.
Improvements from first month remain the same.

Conclusion:
I have noticed a small progression in my right arm and shoulder. After only dropping 2 FRS points in 6 months I would say that my sixth month on lithium has been cautiously successful.

October 1 2008:

I have now been on lithium for seven months.

My ALSFRS-R score droped to 32.

My lithium dose is 150 mg x 4 daily.

My lithium blood level will be checked next month.

Current weight: 160 lbs.

Progression:
Very noticeable change in my left hand index finger.
Left hand knuckles continue to be sore.
Little finger on right hand remains the same.
Right leg is still weak, small noticable progression.
Small progression in my right arm and shoulder.
Breathing is becoming more dificult when laying down.
Still battling insomnia. Falling asleep is easy, staying asleep is tough.


Side effects:
Some headaches this month.
Fasciculations have remained the same this month.
Salty taste in mouth remains the same.
Huge increase in thirst remains the same.
Due to the huge increase in urgency and frequency of urination i am considering changing my dose to 300 mg daily.

Improvements:
No new improvements.
Improvements from first month remain the same.

Conclusion:
I have noticed a small progression in my left hand and fingers. My FRS droped 3 points this month I would say that my seventh month on lithium has been less than successful.

November 1 2008:

I have now been on lithium for eight months.

My ALSFRS-R score droped to 31.

I changed my lithium dose to 150 mg x 2 daily.

My lithium blood level will be checked this month.

Current weight: 160 lbs.

Progression:
Very noticeable change in my left hand index finger again.
Left hand knuckles continue to be sore.
Little finger on right hand remains the same.
Right leg is still weak, more noticable progression.
Right arm and shoulder continue to lose strength.
Breathing is becoming even more dificult when laying down. Seeing my Pulmonoligist today.
Still battling insomnia. Falling asleep is easy, staying asleep is tough.


Side effects:
More headaches this month. Could be due to breathing problems.
Fasciculations have remained the same this month.
Salty taste in mouth remains the same.
Huge increase in thirst remains the same.
Due to the huge increase in urgency and frequency of urination i changed my dose to 300mg in the morning.
This has really slowed down the frequency of urination at night!

Improvements:
No new improvements.
Improvements from first month remain the same.

Conclusion:
I have noticed a small progression in my left hand and fingers. Breathing problems are becoming a concern.
My FRS droped 1 point this month. I would say that my eighth month on lithium has been less than successful.