Progression

[Pandy]

Hi all

Does ALS have a specific progression pattern? If, for example right foot first is affected, would then right leg, right arm be affected? Or could it be right foot then left foot or any muscle in the body?

In general, how weak is a affected muscle before the als spreads? Would you be pretty much unable to use the affected muscle or just weaker then before?

 

[nikolab]

Does ALS have a specific progression pattern?

No, every patient is different!

ALS is collection of different diseases, the only outcome is the same!

 

[hjlindley]

Mine started in my right hand, moved to my left foot/ankle now to my left hand. Every case is different...I find that both frustrating and encouraging, since my progression had been slow.

 

[Pandy]

Mine started in my right hand, moved to my left foot/ankle now to my left hand. Every case is different...I find that both frustrating and encouraging, since my progression had been slow.

Thanks for replying!

When it moved to your foot what was the status of your hand?

 

[lakelover]

My husband started in his left arm, first notice March 2011 then rapidly spread to right hand then right arm. Today, left arm has lost 90% of use, left hand still has strong 52lb grip, right arm is about 80% gone right hand still has a 30lb grip. Right Foot is getting weaker now. Left leg is still strong showing no weakness. Who knows with this disease.

 

[trfogey]

Does ALS have a specific progression pattern? If, for example right foot first is affected, would then right leg, right arm be affected? Or could it be right foot then left foot or any muscle in the body?

There is no predictable pattern by which ALS spreads through the body. The diagnostic standard for ALS requires that the ALS signs be found in multiple regions of the motor nervous system. Depending on the progression rate, ALS may appear to be active in multiple parts of the body at the same time.

In general, how weak is a affected muscle before the als spreads? Would you be pretty much unable to use the affected muscle or just weaker then before?

The progression rate determines this. Fast progression will show up in multiple body parts at the same time, while slower progression may appear to go from one body part to another.

If you have not been diagnosed with ALS yet, why are you so interested in ALS progression? Or are you attempting to diagnose yourself based on the signs and symptoms that you have, which may or may not be caused by ALS?

 

[Flip4it]

I went to the Doctor in March 2011 also. I have been tossed around to doctors and still no diagnosis. Mine started in my left hand then arm then other side. Now in both legs. Left side affected worse. I have pretty severe atrophy in both arms and legs but still walking just very very weak. Appt this Thurs. Just wanted to drop you a note because I went to the doctor starting March and was curious about the progression of this disease. I have very bad cramping in my legs and twitches in both arms and legs and face too. I'm very worried.

 

[TedH5]

There is no set pattern as everyone else has said. The one thing I will say as far as progression rate is that it is typically very linear.

 

[kmendsley]

Everyone is different with where it starts, and how long it goes before another part is affected. I had problems with my left foot, then breathing, and then when foot started to have drop foot my arms and hands started to weaken.

Right now, I have complete foot drop in left foot...it just drags on the floor..can only move toes a little, and right foot is now starting to drop as well. Hands and arms are weakening but not at the rate of my legs. Breathing is about the same...hasn't worsened much. Strange disease it is.

 

[trfogey]

Right now, I have complete foot drop in left foot...it just drags on the floor..can only move toes a little, and right foot is now starting to drop as well. Hands and arms are weakening but not at the rate of my legs. Breathing is about the same...hasn't worsened much. Strange disease it is.

Good grief, kmendsley. If the foot drop on your left foot is that bad, you should have been fitted for AFOs months ago. What's the holdup?

 

[kmendsley]

trfogey, good question! My insurance has been we will say 'less than cooperative' I finally got a walker on Friday...and they are working on wheelchair forms now. Guess they figure what is the point if I am going to be in wheelchair here sooner than later.

Maybe they feel like I was doing well enough with steppage gait?...who knows...I would rather not look like a prancing horse though. :/

I am getting a social worker...tired to fighting for things I should have had months ago.

 

[Pandy]

If you have not been diagnosed with ALS yet, why are you so interested in ALS progression? Or are you attempting to diagnose yourself based on the signs and symptoms that you have, which may or may not be caused by ALS?

Thanks for replying and for trying to set me straight. I am not trying to diagnos myself, I leave that to the proffessionals. Nevertheless, I am very worried over my symptoms and therefor interested in als progression...

 

[TedH5]

You should not be equating whatever symptoms you are experiencing with ALS progression. See a Dr. and allow them to figure out what is going on. Honestly by being here you are trying to self diagnose, which obviously is a dangerous proposition.

 

[hjlindley]

My hand continued to degenerate, and then it went onto left ankle, but I am very lucky that my progression is really slow. Every patient is different.

 

[trfogey]

Thanks for replying and for trying to set me straight. I am not trying to diagnos myself, I leave that to the proffessionals. Nevertheless, I am very worried over my symptoms and therefor interested in als progression...

Which symptoms would those be? You haven't mentioned any symptoms. Have your doctors told you that you need to be worried about having ALS?