Just passed four years diagnosed with bulbar Onset

[jellis86]

Hello everyone,
having passed 4 years since onset, and two years with mechanical ventilation and almost completely paralyzed, I've had some strange occurrences . Firstly, both arms including hands and fingers, are paralyzed, except for my left thumb, it moves freely.
But In January, of this year, my right wrist, regained Some movement, mainly I can lift my whole hand, and I can move it left and right. Although very slight. Last month, my left index finger, started moving, mainly inward, and it has some strength. Outward movement, isn't nearly as strong. I've always understood, that once the muscle, stops moving, that's it, motion will not return.
Can anyone explain to me, the physics, of movement, can it temporarily return? When I asked my doctor, he had no clue. And said that he would talk with other doctors. Three weeks, and not a peep.

 

[affected]

Hey! I often think of you and am so glad to see you back here, especially with such weird and wonderful news to report.

I can't explain but I'm going to say something - I was always under the old impression that nerves don't regenerate and we called the nerves 'dead' when a muscle stopped working. So I always thought that if a cure were found, it would not bring dead nerves to life again. So I thought that meant that a cure would only really be a true cure for people with little nerve 'death'.

BUT some of our PALS that have been on the Lunasin trial have had reversals in muscles or muscle groups, which I should say as neurones because the problem was always there not the muscle really.

So that has led me to understand that whatever happens to the neurones in ALS can in fact be reversed - dead ain't quite dead at all!

Now it doesn't explain what is happening for you at all of course, but it says to me that if something is happening with your neurones then the muscles will indeed begin to receive the signals and start to go again.

Maybe it's worth contacting Dr Bedlack as he looks at every ALS reversal story.

Please do keep us posted!!!

 

[lgelb]

Agreed, you should contact Dr. Bedlack, as he is studying "reversals."

In re the nerve death thing, I think we have assumed that if a muscle stops working, a critical mass of the neurons that control it must be dead. But perhaps they are just "in a coma" (appearing dead on EMG) and can be revived. There is also evidence that in other diseases, the remaining neurons rewire things to control more muscles over time. So if you get treated with something that delays neuronal death, that would give you more neurons for longer that could reorganize. Finally, treatments in development like tirasemtiv seek to act on the muscle itself to make the most of what it has, control-wise.

 

[AKNate]

That's amazing news - are you doing anything different to warrant this new change or did it just happen? So interesting! I hope it gets better & better for you

 

[Nikki J]

Great to hear from you!

My sister regained a small amount of movement too. much less than you though

I have heard an expert say that when a cure is found it may be that PALS can recover. There is precedent for recovery from MND as in polio so the coma analogy Laurie gives would seem to apply

 

[Wburell]

I'm obviously in a different boat than you. I was diagnosed shortly ago but have had foot drop and essentially paralyzed below the knee for almost 2 years. Oddly I just regained the ability to kick my leg out a bit and small toe movement while symptoms have started elsewhere. I was told by Dr. Bedlack that hes seen random localized temporary improvements, plateaus, and even sometimes permanent improvement in areas. I would definately contact that group. They are great.

 

[Lkaibel]

My husband's left foot/leg has improved with pool exercises. Not stayed steady, but actually improved in strength. The Doctor said he thinks it is an actual improvement of the effected neurons and muscles effected by ALS, not just others compensating. His hands have progressed somewhat, just slightly.

Improvement is very rare apparently, but happens, I even personally met someone who was diagnosed with ALS, and the Doctors still swear by the diagnosis but he has not progressed at all in two years, after ending up in a wheelchair and pretty much losing use of his left arm/hand. It's such a crazy condition.

 

[Jlynn]

Wow...I'm mesmerized reading what you all have to say. I can't wait for the day (and I hope it's soon) when I hear there is some form of help to substantially slow progression of the beast at the very least or a cure altogether. Hope...Wish...Pray.

 

[KimT]

Please contact Dr. Bedlack. I'm sure he will be interested. Let us know what he thinks.