seeking input

Status
Not open for further replies.

sdsyd

Distinguished member
Joined
May 22, 2008
Messages
329
Country
US
State
sd
City
piedmont
Hi guys-

my newest symptom is the inability to clench my toes on left. When I was doing stertches over a week ago, I noticed that my right foor I could clench my toes into a fist- so to speak. But when I flex my left the big toe goes down- the pointer toe tries to curl and the last three digits are "dead". Lifting them (extension) has been difficult for some time, thus the orthotics-(pro fit tech for anyone interested-they can be attached to AFO's down the line)) which by the way are helping tremendously with being able to walk up small inclines and handle walking for longer distances.
My PT and I came to a decision yesterday to discontinue until after appt. at ALS clinic Jan 22nd. without knowing what we are dealing with for sure, the high impact stuff was too grueling and I am doing all the stretching at home on my own. I lost ground in most areas anyhow, except right hand grip has increased and quad strength has increased. We gained some passive range in right ankle, which is spastic.

Anywho-
has anyone else experienced the dead toes? They "feel" normal. :O)

Thanks!
Love,
Cindy in SNOWY SD.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Cindy ... brrrrrrr. BRRRRRRRRRR.

Oddly I was thinking of posting a question like this myself. I developed a "dead" big toe several years before any other symptoms of ALS appeared. I chalked it up to arthritis or payback from my toes for wearing high heels all those years, although I don't have arthritis anywhere else, and I've never heard of anyone's toe freezing up from arthritis (or high heels).

All I basically want in health care is a non-fatal label like arthritis that I can slap on something so I can forget about it.

It's only recently occurred to me that this might be ALS-related. I don't know if it is or isn't, but my toe still isn't moving. If it's ALS related, that pushes my onset back a couple years.

What drives me crazy with ALS is that EVERYTHING "feels" normal.
 

sukilou

Active member
Joined
Sep 12, 2008
Messages
63
Reason
PALS
Diagnosis
09/2008
Country
US
State
Or
City
Troutdale
Hi Cindy and Beth--Yep, me too.;) My four little toes on my right foot are immovable. I can wiggle my big toe and that's what helps me to lift my foot when walking. I'm seeing a PT on Monday for an orthortic. And now, to make my mobility more interesting, I'm not able to move my big toe on my left foot. I walk with a herky jerky penguin gait. Because my balance is so compromised, I can only take a few steps unaided, and that is with a lot of effort and concentration to not fall. My 4 wheeled walker is my best friend these days and gives me confidence and stability when moving in and out of the house.

Beth, looking back for the last 10 yrs or so, I'm not certain when my onset really started. I had been told fibromyalgia and thought arthritis also. However, my first bad fall was in Jan 06, so I call that my "start" date. But who really knows because ALS symptoms are so insidious in the beginning.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Great, so now I know that something else doesn't work on me LOL (well partly LOL, partly WTF) Hadn't checked out piggy movement before reading this... my left foot has two toes that don't move at all, and one that is seriously "challenged". So much for the ability to pick things up from the floor with them :cool:

What has been bothering me is my big toe on one foot has been doing this twitch thing where it separates out from its comrades and moves out sideways. I don't think I could ever have made it do this on purpose, its like its possessed.

Re: the afo's... I was such a skeptic, and was surprised to find how much they help me propel myself forward. I have the ultra thin carbon ones, and so long as I wear jeans or sweats that have a wide enough lower leg so that they're not hugging the cuffs on the AFO's, they're pretty much invisible under clothing.
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
Well I have some issues with my toes as well...

I did not even notice there was a problem with toes becasue I could wiggle them all at my nuero appt. After my first als appt (and the doc was very dismissive to me) My husband asked what all she fond that could be als related. She said all she found was brisk reflexes and that my toes on the left foot did not move up. I had not noted this, so of course after that appt all I look at is my toes. I then noted that I could not point the toe on that foot. I use to always do pilates and that has toe pointing. I cant do that anymore, I can scrunch it down. Oddly, I think I can move them up now, but when I make a fist with them they dont close as tight as the other side. At all! Well, I guess it just one more thing to worry about.....

But, I did start asking my family to do toe things. I fond out that alot of people cant move thier toes or in alot of cases even point their toes as much as me! It mad me feel better, untill now.......

Take care all
 

wheeler641

Distinguished member
Joined
Oct 19, 2008
Messages
193
Country
US
State
indiana
City
dyer
hi, I have a couple of dead toes too. On my left foot my pinky and the one next to it will not bend downward, have had it for about a year now, maybe longer but did not notice it until them. Also I cannot spread those 2 toes without trying real hard. Do not know the significance of this. I thought that it was probably diabetic neuropathy and never gave it much thought. I can walk ok and do not have any weakness, also can still walk on my toes. Like I said may of had this for awhile just never noticed it. Still awaiting a diagnosed, margaret
 

sdsyd

Distinguished member
Joined
May 22, 2008
Messages
329
Country
US
State
sd
City
piedmont
Didnt mean to spark a toe frenzy, but nice to know I am not the only one experiencing. Thanks guys~!~!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Boo Boo, get out of here. Do not come back until after your appointment.

AL.
 

Boo Boo 621

Active member
Joined
Dec 14, 2008
Messages
41
Country
US
State
VA
City
Manassas
I will! I'm sorry, I was being serious. And scared. I have been going over my body with a fine-toothed comb. This site and the people have been positive voices for me and I appreciate that. While it sounds trivial, my fear has been very real. Forgive me overstaying my welcome.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Welcome to the "World Of Funky Feet!"

Zaphoon
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
No no you misunderstand. Damn, second one this week and it's only Monday. I meant I didn't want you here reading more symptoms that you would convince yourself you have and when the Neuro says he doesn't see it you;ll be back tomorrow night saying he's stupid. I'm trying to save you from yourself.

AL.
 
Status
Not open for further replies.
Top