So, what's next ?

[JerryD]

Now that I have completed my 5 day infusion with Lemtrada, with little or no fuss, I might add, what is the next step for me ? Where is the nerve regeneration and leg mobility and balance restoration therapy ? I am feeling better than I have felt in years and I am curious to know how my body can be improved. I wqould really love to get my legs back and play guitars, again. Any ideas ? I won't bite or complain . I promise !

[jreagan70]

Hi Jerry:

Glad to hear you're feeling so good.

Where is the nerve regeneration

In the human, dead and fatally damaged cells in the central nervous system don't regenerate. That's why spinal cord injuries and brain damage can't be fixed. Billions of dollars have been spent over decades trying to find a way to do that, but so far it can't be done. So you are not going to grow new nerves. Did your neurologist ever say that was going to happen?

However, nerves that are still only stressed or sick can get better in the right environment. So that might be a way you could gain back some function.

Where is the ... leg mobility and balance restoration therapy?

That's a great question for your neurologist. Didn't your neuro order physical therapy for you?

[Temagami]

Easy yoga, beginner tai chi- a woman in my class has a 4-pronged cane and uses a chair for balance, pick up the guitar and just do the fingering at first. Learn the sa-ta-na-ma yoga chant that stimulates both sides of your brain with a fingering pattern. Ride on your newfound enthusiasm to push yourself to take some steps that you have been afraid to take.

[sing_a_long]

Hi Jerry,

As Jreagan said, dead axons in the central nervous system (CNS) dont regenerate.

The myelin sheath can regenerate but only for a very limited time. Thats why steroids work to some extent for people with RRMS but only if started early.

However, after healing of the CNS stops, people can still see some small improvement because the CNS can learn to do more with less resources. This is called neuroplasticity.

In the human, dead and fatally damaged cells in the central nervous system don't regenerate.

[Thinkimjob]

Well, with any luck, JerryD, at least things won't get worse!

All the best.

[jreagan70]

However, after healing of the CNS stops, people can still see some small improvement because the CNS can learn to do more with less resources. This is called neuroplasticity.

That's correct, Jerry, and it's an important point for two reasons.

1. Neuroplasticity can take place at any time. Which means that it doesn't depend on MS or Lemtrada. You could have all along been taking advantage of neuroplasticity by using your brain through beneficial mental and physical activity.
2. Neuroplasticity also works in the opposite direction. If a person stops doing positive activities, the brain adapts to the declining situation by developing bad, harmful behaviors. So, for example, if you stop walking upright and looking straight ahead and start walking a little stooped over and looking down at the ground, your brain will maladapt by paying more attention to the ground than to the space straight ahead. That leads to poorer balance and more falls.

So now that you're feeling better and more hopeful, now would be a great time to pick up the guitar again and get into physical therapy for your walking and balance to let neuroplasticity start working for you instead of against you.

Also, while cells in the central nervous system don't regenerate, the brain can grow new cells. But again, that has nothing to do with MS or Lemtrada. Your brain could have been growing new cells all along if you set up the right environment for it. It takes active work to set up that environment.

If you're interested in dropping bad habits and developing new ones that can help your brain grow new nerve cells, a great place to start getting information is the books of Dr. Daniel Amen. You can probably get some of them from your local library. His latest book is The Brain Warriors Way. He also has programs about brain health that run periodically on PBS.

You're asking where the improvements are. The improvements will come when you start putting the effort into making them happen. The old saying is true: you get out of it what you put into it.

[MarkLavelle]

... now would be a great time to pick up the guitar again and get into physical therapy for your walking and balance to let neuroplasticity start working for you instead of against you.

Maybe my guitar story will illustrate...

My MS is 95% paresthesia (hand, feet, limbs, 24/7), and initially I found the nerve 'noise' really interfered with my guitar playing. My fingers weren't automatically going where I wanted them to, so I learned I just had to watch them. I also found steel strings really painful (especially once my calluses were gone), so I traded in my steel string acoustic for nylon and bought a baritone uke (basically a 4-string guitar). I still can't play quite as well as I used to, but now I'm playing steel strings again: electric guitar and acoustic baritone guitar (the low B is .070!).

And really all I did was decide to spend a little time every day learning new tunes.

I don't know what your difficulties with guitar are, but I hope this gives you some ideas...

Best,
Mark

[pennstater]

JerryD - want to wish you well. Hope you continue to feel better. Look forward to updates. A gentleman was getting his Lemtrada infusion when I had my Tysabri last time.

I know my neuro and neuropsychologist constantly reinforce the brain's neuroplasticity. As they say, there are no guarantees that all will be overcome, but there is a guarantee that if you don't keep working on it, nothing will improve and even worse, continue to decline.

It can be frustrating to keep trying when no improvement, but there is really no option.

[KatieAgain]

Jerry my friend. I am pleased as punch to hear you are feeling better. Lets hope this is he drug for you! 🌷🌷🌷