Status
Not open for further replies.

michelleRN

Member
Joined
Jul 30, 2011
Messages
23
Reason
PALS
Diagnosis
10/2008
Country
US
State
VA
City
Richmond
Hey everyone,

Brief background on me: first noticeable symptoms in around January '08 at 27 years old, diagnosed October '08 after a failed nerve decompression in my arm (woops!), 2nd opinion confirmed 2 months later, and unfortunately so did a 3rd opinion a few months after that - stubborn, much? The good news is it seems to be a very slow progression. On the every 6-month plan for now at my ALS clinic (Duke). Still work full-time, albeit mostly office-type work, and can still do a lot of what I want to do. Except take stairs. And knit. Not that I know how to knit but no sense in learning now! (Humor is essential!)

So, I have limb onset, began in my right index finger and had begun to insidiously spread upward. Began concerning everyone when it hit the left middle finger. During my diagnosis they did find leg weakness - I had been thinking I was just out of shape and that's why the stairs were becoming so difficult. Oh silly me. However, oddly, the bulk of the weakness has been more in my quads than more distal muscles, as I guess is usually expected, so no issues with foot drop. Well, until now. So here's my basic question. I was told the signs to look out for with foot drop - tripping, toes getting caught, foot slapping the ground, etc. I'm not having that. What I have been slowly noticing more and more is feeling like my foot is defaulting towards an inward turn and turning on the side, if that makes sense. Sort of like when you accidentally roll your ankle I guess? I've always been a little pigeon-toed, but this is definitely different. I have found myself consciously putting effort to straighten it out more and more, only to completely fatigue the rest of my leg by the end of the day.

So finally, the question - has anyone had a similar a-typical situation like this? I've emailed my neuro to see if an AFO will help this the same way it helps regular foot drop. I'm certain he'll be amused as I've been completely resistant to ANY supportive devices to date, but this is definitely starting to aggravate me. So any ideas or input would be great!

Thanks!
 
My feet are exactly the same, especially the left. I do not have classic foot drop, rather my feet turn in and I walk on the side of my left one. Thought I was unique dammit. :) I also have proximal weakness rather than distal, affecting my butt muscles mostly. That means I suck at stairs as well. I do not have ALS, but a provisional diagnosis of PLS, although I do have axonal motor neuropathy in my peroneal muscles (well did have until I had a repeat EMG). I wont go there :)
I was told not to use an AFO as they can cause unaffected muscles to get atrophied with lack of use. You may find the same thing.
good luck
Aly
 
Just be careful you're not falling--or break your foot when it rolls (been there, done that, and it freaking HURT)

I have ankle weakness and my ankle turns--but it also slaps on the darn steps if I'm not very cautious. Your PT and Neuro and OT will have to get together to see what's the best solution for you.

Did you have a history of spraining ankles? i'm wondering if that type of history causes those muscles (ankle muscles) to weaken faster (very unscientific hypothesis as to why my own left ankle is so much worse when both my legs are equally weak)
 
Yes, I have foot drop on my right foot and did roll and hyper extended the ankle in May. My ankle still looks swollen and wants to turn inward like yours. I trip lots and have fallen several times. I'm sorry you're here but glad to meet you!
Hugs,
Marta
 
I think "foot slapping" is like a very first symptom of foot drop. My husband's left foot has done that for a while. But, recently, he now has a kinda roll to that foot. It is scary and if y'all have it you better have AFOs or a wheelchair. I can't tell you how many times my husband has fallen and been seriously hurt with head injuries and bone fractures!
 
Did you have a history of spraining ankles? i'm wondering if that type of history causes those muscles (ankle muscles) to weaken faster (very unscientific hypothesis as to why my own left ankle is so much worse when both my legs are equally weak)

Broke my left ankle twice, sprained it countless times, and diagnosed with arthritis in that ankle -- all by age 30. Which leg goes first from ALS? The other one.

To the original poster -- sorry that you have to join us, but welcome to the board from another one of Dr. Bedlack's patients.
 
Thanks for the feedback! I don't have foot slapping at all, so I didn't think there was an issue. I do roll that ankle sometimes though, never thought it could be from weakness, just thought I was a klutz or wearing the wrong shoes! Thankfully I don't usually fall when it happens, just stumble a little. Pl

notme: I don't have a history of anything with that ankle. I did break my left ankle and my left wrist as a kid but my left side is the happier side now on my body, so I doubt any relation.

The worst is trying to compensate for it. On regular days it isn't so bad, but if it's a day with a lot of walking - whew! - my entire leg is pissed at me all evening. I will definitely be eager to find even something small that will correct it enough so I can go back to pretending I don't have this stupid disease.
 
Foot slapping may be a wrong terminology and I don't know who came up with it. It's more like foot/leg are just not cooperating as usual and the leg just plops the foot down, therefore, the foot slaps.
 
Foot slapping is just perfect......you can hear me coming a mile off, slap, slap, slap :)
 
My husband is being diagnosed for ALS, he has had drop foot in both feet for at least a year. He says he has no power from his instep forward. The neuro put him threw walking and other test for his feet , he could not stand on his tiptoes. My husbands solution last summer ( before we had any idea he might have ALS), was to get Sketcher shoes that have that rocker sole. He has no more slapping foot and feels safer in them than any other shoe. You might try them around your house and if they don't work take them back. Goo Luck!
 
I also had a chronically sprained left ankle, which rolled inward constantly, making me tip over in my garden especially. I initially blamed it on my "loose ligaments" and shoes that were too loose. Until I started hearing the slapping of the foot, and the fatigue of trying to walk. Interesting that the so-called loose ligaments in my ankle were the first onset of this disease.

I do use an AFO for my left ankle/leg at times, but only when I'm out and about, I don't use it in the house as I want to move my ankle and toes to help the circulation as well as preventing the atrophy and stiffness from non-use. I also take the 5000mb of Creatine to hopefully help maintain the muscle mass. Something I found online that helps to stabilize my ankle and isn't as HOT as the AFO is called Dorsi-Strap. It can be used with any lace shoe, and does help stability a little as it prevents your foot from dragging.
 
Michelle, you'd be surprised at how much a can helps with balance. I quickly get tired without my cane trying to stay balanced. I look like a drunk person without it or someone doing a clumsy fix trot. :)
 
I look like a drunk person with my cane as well! :)
 
Yep;

Exactly how my "foot drop" started too....kinda like slinging it around. The foot brace can help with this. Most places have samples that you can try to see what suits you and works best.

- Jerry
 
I meant a cane not a can. LOL!
 
Status
Not open for further replies.
Back
Top