For Those Who Can Still Walk

[vantec]

I haven't been diagnosed yet, but when I walk, my legs feel like they weigh 200 pounds. Does anyone that has ALS, and can still walk, have the same heavy and stiff feeling in their legs?

Conrad

 

[bdyle]

Conrad

Just letting you know my legs feel the same way. I have severe spasticity in mine and they both feel weighted down. My feet feel like they are in concrete blocks. I am still able to walk short distance with a walker, after that I go to power chair.

 

[Lorie]

Still Walking

My Brother Timothy cannot use his arms or hands, he can still walk. Although his legs get tight and stiff. We talked with the Doctor the other day, I asked if she can order in home physical therapy since he can still use his legs, save them as along as we can.
She agreed with me and Timothy will get therapy. Gotta try to keep whats working, working.

Good Luck! My thoughts are with you. :-D

Lorie

 

[brooksea]

Leg Braces created by someone w/ALS

Hey y'all,

Just to let you know on the alstdf forum there's a guy in NC that is an engineer, or used to be one until ALS got him. He was having trouble walking and was not satisfied with the available braces as they were too heavy. So, he invented a new type of brace. My husband doesn't need them at this point, so don't really know detailed info about them. Just thought someone might benefit from this info:

"People , I have finished my light weight leg braces. They are available at ''info@Sprinkle Prosthetics.com..If interested e-mail me or this site.
If money is a problem, we will help.Should cost about 600.00 a leg..

There is an article on Neuro Talk. I will take them for MDA approval this Friday at the Charlotte ALS Clinic. There are pictures in the Spartanburg S.C. Herald Journal..Big write up.. Almost embarrassed me..Didnt know I was doing anything special..But Im glad it made the paper. At least some one may be able to see it and know there is a brace available. Take a look.Could be what you are needing.
Folks, I got tired of falling. And we know , as ALS patients why we fall. I made the brace to support the toe drop, back of the calf, and knee, plus the upper quad. They work !
I mainly made them because there is not a light weight brace out there for our weakened legs.. And because I was told ''thats all we have, take it or leave it''. Thats bull####. If its not there, then make it. ! Ron"

cj

 

[John1]

I haven't been diagnosed yet, but when I walk, my legs feel like they weigh 200 pounds. Does anyone that has ALS, and can still walk, have the same heavy and stiff feeling in their legs?

Conrad

I can barely walk using a walker but when first diagnosed in 2000 I remember telling someone that it felt like I had 10 lb weights attached to my legs. That weight has gradually increased so that today it feels like 50 lb weights. (I don't think you would be moving at all if your legs weighed 200 lb). They are also stiff and this has likewise intensified with time.

 

[MtPockets]

Been There Done That

I know what you mean about the legs feeling heavy. My muscles in my legs are almost completely useless now.
Now it is moving to my arms and sides. I guess each of us progresses in a unique way.

God Bless
Capt AL

 

[Omar]

Hey Conrad, hey guys,

So far I have not difficulties walking, I can even walk for hours, but when I am stressed or have to rush (for example to cross the street while the light is green) or think that people are watching me or when it is cold I start to walk very slowly like a robot and feel that it is hard to move or control my legs but once I reach an area where I feel comfortable I start to walk normally. Sometimes I feel that the stiffness in between my shoulders right under my neck (my spinal) is affecting my legs and walk so I just release it by lowering down my shoulders and it works.

Omar

 

[vantec]

Hi Annmarie,

Thanks for your continued concern for me. I too, am stiff all over, even when I move my forehead muscles. I have seen 7 doctors (2 Neurologists), and they still can't diagnose me. I'm going to see another doctor on the 20th of June, and I'm sure he will make an appointment for me to see their top Neurologist at University Hospitals.

I've been troubled with fasciculation's (at night in bed), my voice is very nasal, and have profound weakness, especially in my legs. I try and walk as much as I can, but I can only walk for about 4 minutes, and have to sit down. Food doesn't taste very good anymore, I'm losing weight, so it is incredibly frustrating to not get a diagnosed, but know I am getting worse.

Conrad

 

[vantec]

Hi John,

Well, I guess they don't feel like 200 pounds, but I can remember when I would carry my old girlfriend on my back (she weighted around 110 pounds), and that it was easier to walk with her on my back, than it is to just walk now. I can notice that my legs are feeling heavier as time passes.

Conrad

 

[vantec]

Hi Capt Al,

I'm sorry to hear that your arm and side muscles are getting weaker. My arms are getting stiff and heavy, but not as bad as my legs. We all do seem to progress in a unique way.

God Bless
Conrad

 

[lynnb0831]

Hey Conrad, hey guys,

So far I have not difficulties walking, I can even walk for hours, but when I am stressed or have to rush (for example to cross the street while the light is green) or think that people are watching me or when it is cold I start to walk very slowly like a robot and feel that it is hard to move or control my legs but once I reach an area where I feel comfortable I start to walk normally. Sometimes I feel that the stiffness in between my shoulders right under my neck (my spinal) is affecting my legs and walk so I just release it by lowering down my shoulders and it works.

Omar

Omar,
I am curious about the symptoms you describe. I have had similar symptoms for almost a year now and my doctor (neurologist) can not diagnose me. My legs stiffen if I am walking down stairs, I can't move them at all and it will throw mw backwards. Also, it's just the calf muscles and if I am surprised or around people, I can not walk because they stiffen up. I have to walk by people and not look them in the eyes to be able to make it. If I get startled or surprised, the same thing happens and I fall backwards. Right now he has me on valium which is working wonders but the symptoms are stilll there. Does this sound like it could be ALS to you and if so, is there some kind of blood test that could be taken to find out? Lynn

 

[awieleba]

walking/arms

Would it be safe to say that the progression in the legs makes them feel heavy? Like it is hard to walk and lift your leg and such?Or is it diffrent for all? My leg feels like it is in a cramp without having one, and it gets stiff but I can still move it. They dont feel heavy just aching or stiff and when sitting or laying they are easy to move.(tapping foot and moving foot back and forth in nervous energy habit) *Does als weakness happen while at rest or I am sure that it takes awhile to get to that point? That is leg has lost muscle in anke and behind knee and thigh. My arms feel really heavy, but I can swing a golf club and cook. They feel the worse in the car when holding the steering wheel and I just want to drop them to my side. Not a good sign. *do most people or some start with the aching pain not related to cramping?

I guess my quesiton is: since I have muscle thinning in these area's and in my hands and wrists over a 6 month period and I can still walk and golf, did anyone have the muscle thinning before the real weakness set in? I thought you would be weak for awhile and then get muscle thinning. (I dont like the word wasting). I cant do any real physical work out that I did last year. OR do you get the weakness because you are losing muscle. (wich I am)

sorry to ramble I just feel a bit more nervous every day that I get worse and not better.
I keep thinking it will get better.........................................

Regards,

april

 

[BethU]

I have had similar symptoms for almost a year now and my doctor (neurologist) can not diagnose me. My legs stiffen if I am walking down stairs, I can't move them at all and it will throw mw backwards. Also, it's just the calf muscles and if I am surprised or around people, I can not walk because they stiffen up. I have to walk by people and not look them in the eyes to be able to make it. If I get startled or surprised, the same thing happens and I fall backwards. Right now he has me on valium which is working wonders but the symptoms are stilll there. Does this sound like it could be ALS to you and if so, is there some kind of blood test that could be taken to find out? Lynn

Hi, Lynn ...

This is probably completely off the wall, but my second diagnosed was for something called Progressive Supranuclear Palsy, and your comments about falling backwards and not being able to make eye contact raised a red flag. My neuro #2 kinda sorta thought I had it, and gave me several websites to check out. Each one mentioned that one of the most common symptoms of PSP is falling backwards.

The following quote is from the National Institute of Neurological Disorders and Stroke website about PSP.

The most frequent first symptom of PSP is a loss of balance while walking. Patients may have unexplained falls or a stiffness and awkwardness in gait.
(snip)

As the disease progresses, most patients will begin to develop a blurring of vision and
problems controlling eye movement. In fact, eye problems usually offer the first definitive clue that PSP is the proper diagnosis. PSP patients have trouble voluntarily shifting their gaze downward, and also can have trouble controlling their eyelids. This can lead to involuntary closing of the eyes, prolonged or infrequent blinking, or difficulty in opening the eyes.

Another common visual problem is an inability to maintain eye contact during a conversation. This can give the mistaken impression that the patient is hostile or uninterested.
-------------------------end of quote---------------------

PSP is a very, very rare condition, but it is not fatal, and most patients (the web sites say) live normal life spans.

This is just a shot in the dark. I had never heard of PSP before my neuro #2 diagnosed me with it. Since I had none of the most common symptoms (falling backwards, gaze issues, etc.) I assumed he was wacko.

I don't know how they diagnosed it; in my case, I think it was a guess based on (faulty) clinical observations, since I was not falling and had no trouble making eye contact. And then neuro #3 diagnosed me with MG, and I was off and running with that.

Good luck! Hope they find a "name" for your condition soon, and that it is good news.

BethU

 

[lynnb0831]

Omar,
I have very similar symptoms as yours but most symptoms from these posts are not the same as ours...I would love to find out exactly what you are going through...I have no diagnosis after almost a year and am extrememly frustrated.