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chris_uk

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Hi all

I know this has been discussed before but i am trying to pin point exactly the feeling i have in my calfs and legs. Constant twitching in my right calf for coming on 6 months now, had a slow nerve test in that leg and a relatively clean EMG (minor abnormalities, clinically insignificant)

Over the past 6 months my leg is steadily getting worse for me to walk on, i just dread walking and feel so nervous about walking anywhere. When i walk i am ok for about the first 5 minutes then the weird feeling set in. Its all in my right leg where the twitching is constant, i get a really really sore calf after about 5 minutes of walking, to the point where its sore to touch. I can still run and walk fast but then my whole leg starts to ache around the calf and knee area.

I am convinced i am dragging my right foot slightly too, when i see my self in shop windows walking etc my left foot is fine but my right leg kinda swings a little, not alot as my wife swears she cant see it but i can.

So anyway when i walk for about 15 minutes my calf is really sore and leg is aching, if i stop for maybe a minute, its then ok for about a few minutes then will go all achey / sore again. Is this weakness?

When i come home from my walk (i try to walk 15 mins a night now) i can still run upstairs but its more painful. I am at my best when i have rested it for a bit but it always comes on.

Is this how weakness starts? i dont see my Neuro uuntil july 28th and i am worried that if it is wekaness then this with twitches would not be a good thing to have to wait until nearly august to be seen to.

Thanks all

chris
 

Jennifer51

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My weakness has come on slowly and I was told by the neuro that I had it before I even noticed it. I do not have painfull to the touch calf muscles, but a little cramp and extreme stiffness. Weakness for me is when I try to walk up any step, mind thinks I am doing it but leg does not and will not accept my weight, it takes me a while to get up from sitting as well. Legs feel like lead all the time I walk and I dont pick my feet very high. I can only walk on my treadmill for a while whist hanging on and on my static bike I can only do half the miles I used to do, and a lot slower. My twitches have been body wide for nearly a year now, but the weakness does not necessarily match where the twitches are or have been.
Hope that helps.
If you are that worried shy dont you get to see the neuro sooner. If your gp really thinks you have als, he is duty bound to get you an emergency appointment...so my doctor told me when I first saw him. Failing the you could always pay a one off appointment privately, should be less than £200 but well worth it if you are SO concerned.
 

hopingforcure

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Agree with Jeniffer, does not sound like true weakness to me.. I think being able to walk for exercise is a good sign. I was a super fit person, and from the start that changed, I was sure I was weak.. That is the difference between clinical weakness and perceived weakness.. Clinical weakness mean's you cannot will yourself to do something no matter how much you would like to do it.. Perceived you can push, sounds simplistic, but that sort of sums it up for me, hope this helps you.
I can honestly say that I have seen a TON of people who were worried that they had ALS, come to the board, and leave never to be heard of, with No als, so take this for what it is worth.
 

BethU

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Chris ... No, soreness isn't the same thing as weakness.

How I first noticed weakness in my left leg was when I was kneeling on the floor and tried standing up with my weight on my left leg and my right leg as "pusher." I went down like a ton of bricks. I've not been able to stand up putting my weight on my left leg since.

And even using my left leg as pusher, I can't do it as I always have. I have to push with the TOP of my foot, not the bottom. It's rather awkward, but it seems to utilize muscles that are not as impaired. And of course, I have to use two arms to pull myself up at the same time. If I'm on the floor, I have to crawl someplace where I can pull myself up with both arms, plus my left leg pushing and my right bearing the weight.

I haven't noticed any problems walking, except overall weakness and shortness of breath. I certainly walk MUCH more slowly than before. I was always a brisk, impatient person, but those days are long gone ...

One thing about the foot drop: if your wife can't detect it, then it sounds to me like your gait hasn't changed, but your awareness of it has. When we are worried about health issues, we start looking for symptoms to validate our fears. When I walked around the halls with my neuro last visit, she said I was dragging my feet. Which immediately reminded me of my mother's manta all through my childhood: Will you please pick your feet up when you walk! I told her I'd always walked this way, but she had that look on her face like, "Yeah, right."

But I agree with Jennifer ... your appointment is a long ways off. I assume it's just a follow-up. If your symptoms have changed in any way, then that would certainly justify moving your appointment up.

Good luck.
 

isle667

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Beth thanks for the explaining that, while reading this thread, i was wondering too what true weakness is opposed to precieved weakness.
 

Boo Boo 621

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Even I am going to chime in here!

Isle667: Please go back and read the posts on this thread again. There are at least three folks who have explained the difference between true (clinical) weakness and perceived weakness. I learned (through much paranoia, fear and over-body-checking of my own) that there is a great deal of difference. You would simply KNOW. If you can still do what you've always been doing and if your thoughts of action are actually followed up with that action, then everything appears to be operating smoothly.

I have read your posts and man, this must've been what I sounded like for weeks on end. I understand becoming fearful and thinking the worst; plus I understand seeking out folks that may offer some advice or suggestions or whatever, but in the end, you must go see a doctor/neuro, talk to someone, try to focus on that yes, you do have age on your side. Try to relax!
 

awieleba

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Chris~

I know what you mean, as I have the same issue's with my calfs and feet with ankle for that matter. My calfs feel sore after moving around and it is in the area just above the knee when I step up a curb or stairs. Some days even If I am just around the house with kids and doing laundry my legs ache. They often feel sore to the touch as well. My twitching was widespead last sping but seems to have settled in my feet/ankle/calf. My arms are starting in with heaviness.

ANyway, I think what you are trying to figure out is what I wonder. Wich is wonder if this is the start of weakness. I think that maybe my muscle's ache because some are weak and the other ones have to make up for weak ones? I understand the difference b/w clinical weakness and percieved~beth, that was a great explanation!

But, I also think that it has to start somewhere, not just overnight you cant do something. people say it is something you use to be able to do and no longer cant, I mean if I use to play 2 hrs of tennis and now I cant play at all or longer than 5 mins, well that would be something that I cant do anymore. I use to tickle my kids for long periods of time with games that we made up, Nope cant tickle anymore without my fingers hurting or feeling weak.If you to jog and know you have to walk? So, personally I think that weakness can start out like this and then graduate to clinical weakness. ....JMO...and I know MANY other things than als can cause weakness, so I am not saying you have it or I do for that matter. Just making a point about weakness and when people say not to worry or that doesnt sound like it. I know they want to make us feel better.

And if you had foot drop, others would notice and I would think that you would trip or fall. You could call your neuro, but it seems there is not alot they can do anyway, in my expiernece anyway.

Hang in there.

april
 

BethU

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Hi, April ... you make a good point. However, in my case, I believe that I simply ignored/compensated for gradually increasing weakness until it hit me in the face (or butt, as in my example). You know the saying: The straw that broke the camel's back. It probably was harder and harder for me to stand up, but I chalked it off to old age till, boom, I'm flat on my back. I don't go through the day calibrating the effort it takes to turn a key, or stand up, or walk to the door. As long as I can do those things, I'm a happy camper.

One thing I want to clear up, as I think this is behind SO MUCH confusion on this forum. You say, when people say not to worry or that doesnt sound like it. I know they want to make us feel better. Wow! Is that what you and other non-PALS think?

When I try to tell someone not to worry or that doesn't sound like ALS, what I mean is: THAT'S NOTHING TO WORRY ABOUT. IT DOESN'T SOUND LIKE ALS!

Perhaps this is why people without ALS keep arguing and arguing and arguing with those of us who have it. We are trying to explain that their symptoms are not suggestive of ALS, and they figure we're all blowing smoke.
 

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my regular GP is a barrel of laughs, he is the greatest guy and would never switch docs as I beleive he really is concerned about me. But he has a bad habit of talking quietly to himself, however not so quiet I cannot hear him. He has given me a few anxiety attacks, one when he was reviewing my labs and mumbled multiple myloma under his breath and another time when he mumbled something about family history of colon cancer, Then he really freaked me out one time when he mumbled possible stroke, which by the way almost gave me one.
 

chris_uk

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so does what me and awieleba have sounds like the start of weakness?
 

BethU

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Last try ...

To me (no medical knowledge/training), if April can only play tennis for one hour instead of two, it indicates a loss in stamina. If she couldn't pick up the tennis racket, that would indicate muscle weakness.

Same with tickling her children. If she can only do it for 5 minutes instead of 15, it indicates to me that either a) she's getting a little older or b) she has some debilitating illness that has not yet been diagnosed. (So many to choose from.) If she couldn't pick up her child, that would indicate muscle weakness.

With you, Chris, if you can still run upstairs but find it painful, that's Something Wrong. If you can't walk upstairs because your legs can't lift your body weight, that's muscle weakness.

Trying to define exactly what you're feeling is a waste of time. I think you're hoping that if you can find just the right description, everybody will say AHA, so that's what you mean! It's ALS after all! All the time you spend chasing after definitions that will prove you have ALS is time you are losing in finding out what's really wrong.

I hope you will stop feeding this obsession soon, find a diagnosis of what's going on, and get back to your life.
 

rose

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OK..... Joining the party late, and only popping in for this one visit!


(Margaret, your gp sounds so eccentric, how funny.)

I asked my PT earlier this week why it was actually more difficult for me to go down steps than to go up them. He replied that it made perfect sense, because it actually requires more muscle strength to go down a step, this having to do with a muscle lengthening while contracting, not sure exactly what he was getting at, but it doesn't matter, you guys can look it up if you want to delve further into it.

In contrast, it requires less muscle strength to go up a step, but, obviously, a person is going to get winded and tired quicker going up flights of steps than down, because of its overall effect on the entire body, which takes stamina, the exertion on the heart to pump the blood, oxygen intake, etc, into the equation as well.


Just remember, whether or not you are weak, whether or not you have a terrible illness, you can't get time back. Once its past, its gone. There have to be better things to dwell on than the unlikely.
 

wheeler641

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oops, my above post was not meant for this thread but rather the one about reading too much in to your doctors responses started by tiger. I just wanted to point out all doctors have different ways of saying and doing things. Oh well I don't know how to move it so here it stays:?
 

brendapals

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hey Margaret,
I'm a hijacker also I suppose,

I was reading about your dr that talks under his breath, and I thought how funny it would be if you were to mumble something like "gosh, I hope I'm not pregnant", reminds me of the summer of 1993, my sister and I were both pregnant.

We would spend our lunch hr at the nursing home with our mom. when we walked in her room if one of the workers was in there, she would say "Ahem, I'm the one that's NOT pregnant!" And of course we would all just cackle!
hugs,
-b
 

olly

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clinical weakness in my left lower leg was noted by the neuro,i knew i had a problem with it but it was still a supprise to hear the neuro say it.
i got to the point with stairs were i was using the banisters to drag myself up(i had 2 as adaptions put me a extra one on)ended up breaking one as it was coming away from the wall .
i had a few falls going downstairs but for me i think it was more of a balance problem with that then weakness.
there were times if i was really weak or ill my son would have to lift my legs one at a time onto each step ,i even sometimes used to go down the stairs on my bottom.

true weaknes effects day to day living,that is doing things you NEED to do.
i loved cooking but now trying to cook a basic meal is getting impossible,i can do microwave/oven dinners.............they are muscle weakness friendly lol.
 
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