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Marco Polo

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Learn about ALS
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Beaufort
(assuming for the moment that I have numerous signs of BFS or ALS...major 24/7 twitching in calves, intermittant twitching everywhere else, brisk reflexs, suspect looking muscle areas)

My situation is that my ability to lift X amount of weight with X muscle seems to be same as ever (known from actual records of various exercises kept from weight gym use a year ago), and endurance seems the same (maybe)....BUT, my left leg will get a constant pain in the hamstring and thigh just after the slightest amount of exercise which makes me feel weak, even though if I test the hamstring strength on machine, I may be able to do same number of reps as a year ago (but I avoid that as I know there will be alot of pain if I do)

So, my theory is as muscles atrophy they may have to atrophy alot before you notice actual differences in their ability to move X amount of weight, but they will get "sore" very easily. For example when I get up in the morning my legs feel fine, but just one walk down the stairs and I start to get pain in my left leg. What say ye ?

PALS, as your legs got weaker did you experience soreness and pains or did they mostly just get weaker without much actual pain involved ?
 
The muscles in my left leg just got weaker, no pains.

Any pain / cramps that I have now, I can relate to not stretching , using those muscles for a period of time. Every day with I bathe , I given the muscles a little stretch, which is good for the day.
 
The muscles in my left leg just got weaker, no pains.
If you don't mind talking about it further, can you describe how that expressed itself over time ? Did you suddenly find one day it very difficult to walk properly....or was it a very gradual decline that perhaps you didn't notice at first but then one day stumbled or tripped for no good reason ?

I recall reading somewhere that Stephen Hawking's initial symptoms were simply that he noticed he was more "clumsy" and he stumbled down some stairs at some point ?
 
hi marco.
weakness is gradual but it depends alot on how fast or slow progression is in a person.
i always have muscle soreness,in the begining it was after x amount of activity but now it's all the time even with limited mobility.

you are right,stephen hawkins first symptom was falling over alot and people thought he was drunk.
 
Marco, your theory is 100%, completely wrong. If atrophy is due to ALS, then weakness would be profound. Weakness PRECEDES atrophy, so you will be weak long before you notice atrophy. It's as simple as that and has been stated on this site more times than I can count.

Your story is NOT the story of someone with ALS. RELAX!
 
Marco Polo: I twitch 24/7 and when I mean 24/7 I mean 20 times at 5 different places. My feet, hands, bicep and leg cramp A LOT. Yesterday I went to my neuro again, he's a professor in MND, before him a saw another als specialist they both say this is BCFS.
Even I have a hard time to believe this is something benign. My body hurts, twitches and cramps like crazy and I'm only 30 years old...maybe they are both wrong on this...I don't know...
 
Bart,

I would take solace with what your doctors have told you. They are specifically trained to know the difference between ALS and non-ALS maladies. If they have told you it is BCFS, believe them. You are still to be pitied as BCFS is a nasty thing to have.

Zaphoon
 
Bart ... the word "benign" doesn't mean that your symptoms don't hurt a lot, don't annoy you a lot, don't interfere with your lifestyle a lot, etc., etc.

It means they won't progress and kill you.

I think you've hit the nail on the head when you say, I have a hard time to believe this is something benign. My body hurts, twitches and cramps like crazy .

I think so much of the confusion around ALS symptoms is simply a failure to communicate. People think that benign means something is mild and temporary, like the common cold. They assume that the more something hurts, the more serious the underlying cause must be.

With ALS and BFS, it's just the opposite. In ALS, twitches, cramps, etc., come later, after more subtle symptoms have occurred. In BFS, symptoms like that are annoying and painful right from the start.
 
Thank you for your answers.

It's so hard to believe a benign condition can make you feel like this.

The thing is, I can't get the twitching and cramping preceeding weakness posts out of my head.
I don't understand why they can say to be it's 'only' BCFS with one EMG (from 5 dec 07) and a clinical as you read others started with twitching and cramping as well.
If I only had the twiching I wouldn't be alarmed . Sorry I'm really down at the moment
 
Bart, it will take a little time to work through the anxiety. I KNOW what you are going through - trust me on that.

Work with your doc to try 1) naturally minimize the pain and twitching by eliminating the normal triggers - stress, anxiety, caffeine, tobacco, alcohol, etc. If that does not help, 2) try prescribed medication to help your muscles relax some. I've had to go the 2) route unfortunately but it does help.

And read rose's post about celebrating no-ALS if you have not already.

Like I said, give it a little time, but focus on your blessings and the enjoyment of life and you will dig out of it. You can do it! Now go do it!
 
Bart, you say "if I only had the twitching I wouldn't be alarmed." I am assuming you are referring to the cramps, yes? But BFS also has a variant, BFCS which includes the cramping. Yes the cramping feels awful (believe me I know), but it is still "benign" in the sense it won't kill you. Look, I am the perfect example of what you fear: I started with twitches, then later came the cramps, then some focal and generalized weakness, and just to really make your nightmare come true I have neuro-confirmed thinning in forearm and mild atrophy around ankle and guess what? No ALS. So even if your worst fears come true, and that weakness shows up, say in about a year, it still doesn't mean you have ALS. I don't know what is going on with me but trust my clean EMG (was hard at first, I admit) and have found great comfort in a post on another thread (by BethU?) about the longer it takes to figure out what is wrong with you the less likely it impacts your life expectancy (or something like that). I know you are worried but you are getting out of control here!

Try to do something proactive to take care of that anxiety-

Lydia
 
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