toes

[stumble]

The other night when switching from wheelchair to walker because the wheelchair dosen't fit in the bathroom I noticed the toes on my sciatic side were all curled under, with toenails pointing toward the floor. I realize this is an MS thing, but do have two diseases or is something PALS get?

I have never worn high heels or sandals, and more often than not wear New Balance sneakers

 

[Nikki J]

It definitely can be a PALS thing. There was a recent discussion about this in one of my facebook groups and several people had it.

 

[Vincent]

As someone who wears AFOs on both sides I'm reasonably familiar with losing the dorsiflexors. With nothing to oppose the plantarflexors the toes are going to curl down. It is what it is.
Vincent

 

[acesjr68]

My toes curl up on my drop foot side , i have an afo but don't use it that much(because i am afraid i will lose muscle strength).

 

[gooseberry]

They noted this for my husband at clinic, downward curling toes. Didnt think of it as significant but now I know it probably was...

 

[stumble]

what's an afo?

 

[Dusty7]

ankle foot orthotic
a device that supports the ankle and foot area of the body and extends from below the knee down to and including the foot

 

[stumble]

All my strength is in my upper leg and one in my lower leg so would an afo help me?

 

[krnNdug]

My right big toe constantly bends downward via fasciculations. It is really weird to watch. I get mesmerized watching them at times, of course when trying to sleep it totally stinks!

 

[Atsugi]

All my strength is in my upper leg and one in my lower leg so would an afo help me?

An Occupational Therapist or Ankle-Foot doctor would answer that. The AFO supports your foot so it doesn't drop down due to ankle weakness. It's essentially a plastic boot that is custom molded for you.

 

[Atsugi]

My toes curl up on my drop foot side , i have an afo but don't use it that much(because i am afraid i will lose muscle strength).

I don't think you have to worry about losing muscle strength due to the AFO. Either your muscles are going to work or they're not, depending upon whether the corresponding motor neurons are affected by ALS.

 

[Diane H]

My toes curl up on my drop foot side , i have an afo but don't use it that much(because i am afraid i will lose muscle strength).

Uh huh. And how much muscle strength will you lose while you are in an ankle cast or hobbling on a screwed up knee or worse? Time for some tough talk.

Whether you use the AFO or not, you have already lost some muscle stength and will continue to lose more. Research hasn't found anything to support the "use it or lose it" idea in ALS beyond common sense in continuing to do what you can safely and without muscle strain.

The risk of not wearing the AFO ranges from mere broken bones to severe knee back, shoulder, or head injuries. Those injuries are "gifts" that keep on giving even after they have mended. With ALS falls are harder and more damaging because you don't go down easily and can't do anything to save yourself. Any fall is an emotional setback and a cause of increased disability in the short term and more likely to continue to cause problems later. Don't make this rotten disease take away mobility any faster. Using AFOs, walkers, wheelchairs is not giving in to ALS, it is fighting back.

 

[affected]

It is a misconception for PALS about 'using it or losing it'.

I know it seems to make sense, but over-using it (which can mean doing far less than one used to do), or doing what you really can't, or being unsafe and having falls ...

Those 3 things will cause the fastest progression of anything.

I'm not saying PALS should just sit in a corner and do nothing, not by any means. But using all the aids that assist your particular situation is truly good sense.

To the OP, my Chris did not have this toes issue, but we noticed that his hands curled in, whilst PALS with lower limb onset very often had the toes curling instead.