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!
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!