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upila

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Hello everyone,

Sorry I have not participated in a long time - life has just been difficult..., and I will leave it at that.

Please, can you give me some input as to the followng:

From the moment one develops a "foot drop," what is to be expected later on, is the progression at all identifyiable or does it also vary? Can the weakness continue without falls, or are falls a sign of speciffic point in the deterioration process? How long has one gone from the drop symptom to inability to walk?

Any time-table on what to expect?

Please!
 

terri

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Hi Upila,

I only know what has progressed with LB. His foot drop came about six months to a year after his leg started giving him problems. That was about two-two&half years ago. He has been diagnosed about 14 months. Today his left foot is still unaffected but his left leg is weak and has lost lots of muscle. I will say, that his swelling and red/bluish color ankles came along with his drop foot. His left foot is now swelling, so I guess we will see if it follows the same pattern. As far as his walking, not much. Some of that is weak legs but most is he doesn't have the air and gets too tired.

I wonder what next, guess we can't help that. Well, that's whats happening here. Hope it helps put some of your pieces together.

terri
 

upila

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Thanks Terri,

It seems this has taken time to develop.
My father did not have any problems with his legs, such as stumbling, falling, etc. - rather it was fumbling fingers which brought on the attention. Actual first symptoms noted start of 2003, mainly fascic. and cramps, but diagn was not until another 1 1/2 years later since no one really thought anything was wrong. Left foot drop came about very gradually without any other problems and was prominent as of 1 year ago-I called it foot "flapping." So now, 1 yr after, still no falling, stumbling, etc., but the left leg is so much weaker due to muscle loss in the calf, it is affecting walking. Pushing stregnth is still relatively there, but lifting is not, so I suppose that is what causes the drop. The right leg is not affected as much, but is carrying all of the weight so it is beginning to weaken.

Would appreciate any additional feedback.
 

terri

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When I think about what you said about the cramps before the foot drop....yes, that happened here too. We have not journaled what happened when and it is easy to forget just when stuff sneaked in and settled. LB has lost use of that right leg and foot. He moves it and picks it up with his hands. He has had his share of falls. Most of them seemed to have happened when he would try to move sideways. I think the trunk of his body would move and his legs were stuck and that would cause him to lose balance. How is your father's back and diaphragm doing? That took the next hit with LB after the right leg. Now his voice and breathing are taking a beating. The left leg, as I said earlier, is slowly letting him down. LB has cramps in his hands but good use of them and his arms. He real good with the remote!
 

upila

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-:)

If anything can put up a real fight with als - it's the remote! No matter how worn and slippery it may be from use...

He is fine with breathing and upper body in general. Hands are weak but have leveled off and both are now the same. He has strength in biceps, it's the hands & wrist to elbow where the muscles have weakened/diminished.

Balance is ok and he has not stumbled/fallen yet. But, is making sure he lifts his left foot high enough so he does not accidenatlly drag it and trip.

And through it all, he is on Lyme treatment, which is resulting in almost constant Herx. Once in a while he gets treated to a good day, but mostly he is under the assault of the bacteria reacting/dying from the antibiotic. This triggers extreme and total fatigue and weakness, which can last from 2 to 7 days, then it goes a way and just as one think it's finally over, it comes back with a vengeance. But, it is a typical reaction and it is supposed to be good to feel that bad... Yeah.... it is hard to distinguish what symptom is from what illness.

He does not have any cramps and has not had any for over a year and half. We got rid of them somehow, by stopping calcium supplements and taking liquid magnesium, also zinc&copper combination instead. Also, the spasticity has been gone for over a year, and he no longer has that need to stretch (which before used to trigger cramps). Agility is pretty good. He has not seen a neuro dr since initial diagn.

Will see what develops in three months.
 

Suzanne_Oz

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I don't know the technicalities but there is a kind of shoe insert you can get to prevent the foot dragging. From what I understand it holds it at a right angle, and the toes can't drop down, and this lack of dragging will prevent falls. Maybe someone has one and can offer more advice.
 

MaggyQ

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I have not been diagnosed with ALS, but have a suspected diagnosis of monomelic amyotrophy. The doctors remain puzzled, but are in a wait and see mode. (Basically, go back in for more EMG/NCVs or if condition really starts to worsen).

Anyway, I developed a right foot drop starting in about June 2004. At that point had to
change the type of shoes I was wearing. By summer 2005, I could only wear completely flat shoes.

In about September 2005, the doctor prescribed what is called an Ankle Foot Orthosis (AFO). This is custom made by a prosthetics company. They basically take a cast impression of your foot, ankle and calf right up to the knee. From this they mold a plastic orthotic device.

Mine is a milky white smooth plastic. It is flat at the bottom and goes up until around the ball of the foot. The heel is like a round cup. The device goes up the back of my leg and several inches below the knee curves inward. Across the front is a velcro strap.

The device works like a lever. As you step on your heel, it pushes up the front of the foot. The back of the orthotic cradles the back of the leg and gives added support.

If anyone has foot drop, they should definitely look into this.

I was resistant at first, but my husband really encouraged me to try it.

Of all the money I've spent in this horrid diagnostic process, my share of $137 for that device was the best money spent. It's been a real help.
 

upila

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Thanks!

MaggyO, what is the current state of your leg(s)? Do you have any muscle athrophy on the affected leg? Has your walk been further affected?

I guess, what I am trying to get some feeling for is the time-table from foot drop, to severe muscle athrophy in calfs, to inability to walk/support body weight.

I know it varies with each individual - still, somehow, there is a sort of hope by hearing from others...
 

terri

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I remember in one of Carol's post, she stated Henry could support his weight, with assistance, up until the time of his death. I'm counting on that blessing for LB!
 

MtPockets

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Afo

My Neuro considered a afo for my foot drop but said she thought it was a waste of money since I would soon be in the wheelchair full time. I was falling about 5 times a week when doc said get ur butt in wheelchair and stay there, before you break something.

Think she is right. The AFO might have helped my foot drop but have lost side balance muscles in legs and feet. If get on uneven surface...look out below.

Hope it works for you, I know we all progress at different rates.
AL
 

MaggyQ

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upila said:
Thanks!

MaggyO, what is the current state of your leg(s)? Do you have any muscle athrophy on the affected leg? Has your walk been further affected?

I guess, what I am trying to get some feeling for is the time-table from foot drop, to severe muscle athrophy in calfs, to inability to walk/support body weight.

I know it varies with each individual - still, somehow, there is a sort of hope by hearing from others...
My right calf and thigh are atrophied. My husband has taken to doing weekly measurements. The left leg/thigh is approximately 1 1/2 inches larger than the right. The atrophy on the right is noticeable. It has increased since I got the AFO, but of late has seemed to be stable.

Some minor atrophy in the calf was first detected by a doctor in around March 2005. The difference was not too great between legs at the time. However, it was about that time that I first noticed an inability to move my big toe and the one next to it. I still thought I had a peripheral nerve injury since that would be the location. Up until then I thought that my problem would solve itself before the doctors figured it out. The toe problem really gave me pause.

The atrophy on the right (particularly in the thigh) has an effect on my ability to lift my
leg, as you could imagine given the loss of muscle. It feels like someone has placed weights around my ankle so that it takes more energy to lift. Stairs are difficult.

If your loved one has experienced foot drop and is still able to walk, I can only say that the AFO is very helpful. It gives additional confidence and support. But, it's not much of a fashion statement.
 

upila

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Again, thanks for your responses.

MaggieQ, there is some similarity in what you describe, although seems my father's muscles to begin with must have been much stronger, hence stilll holding him pretty well, especially the thigh ones, have some "dents," but still pretty much in tact. With him it's reversed - left foot more so than right. The right one is still at around 80-90%.

He does walk sideways, so his blalance muscles must be not much affected yet. And, he can move his toes up/down - which he could not at one point. He thought this resumed as a consequence of the antibtx treatment for his Lyme. But, after repeating the movement 7-8 times, the foot tires and stops.

Does anyone report stiffness of legs and/or arms when muscle damage has already ocurred? Any weakness to the point arms can not be lifted above head?

While he has lost muscle noticeably, there has been no problem with flexibility or movement to any degree. And, still, he has had no cramps since early 2005.
 

MaggyQ

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upila said:
Again, thanks for your responses.

MaggieQ, there is some similarity in what you describe, although seems my father's muscles to begin with must have been much stronger, hence stilll holding him pretty well, especially the thigh ones, have some "dents," but still pretty much in tact. With him it's reversed - left foot more so than right. The right one is still at around 80-90%.

He does walk sideways, so his blalance muscles must be not much affected yet. And, he can move his toes up/down - which he could not at one point. He thought this resumed as a consequence of the antibtx treatment for his Lyme. But, after repeating the movement 7-8 times, the foot tires and stops.

Does anyone report stiffness of legs and/or arms when muscle damage has already ocurred? Any weakness to the point arms can not be lifted above head?

While he has lost muscle noticeably, there has been no problem with flexibility or movement to any degree. And, still, he has had no cramps since early 2005.
I have a suspicion that the cramps stop or lessen considerably before other symptoms are noticed. In my case, I went through close to six months of almost daily cramps in my right calf with no other symptoms, until quite late in the game when I started noticing a very slight right foot drag. Almost simultaneous with development of the drop foot, the cramps stopped. I can't say that I've been much plagued with cramps (read: charley horses) since mid 2004, other than the occasional abdominal cramp if I bend down from the waist too fast. I did, however, develop fasciculations in the right leg after the atrophy.
 

upila

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MaggyQ, first - sorry, I've spelled your name twice wrong...-:)

I am surprised to hear that your fasciculations came AFTER the muscle waste? I thought they preceeded that. My father had fasciculations 2 yrs before any hand weakness finally was noticed.

Anyone else's comments on that?
 
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