ALS Support Community

Anything abnormal! Some days I think, I couldn’t have this because surely I would still be able to go to work, but I think I’m just motoring on better than I thought could

Tell me if I sound insane here! Next time I see my neuro! I feel like saying, this isn’t up for debate anymore! You need to open your eyes and see what’s wrong and do what your getting paid great money for! My body is fading away, if you tell me I’m fine again I will push you out the window! Joking I think I just needed to say it out loud to a fellow frustrated buddy

just been reading back through the comments, as im working most of the time I’m active on here, blacksheep is spot on staying away from DIHave forum is best, at the end of the day we joined to try and find answers, we didn’t, but we did find others who can relate

And it’s helped me massively to get through the days! We will figure it outs guys

My left foot is cramping during the day while walking, anyone else get that?

I’m not getting any full on cramps per se, but do feel like I’m in frequent pre-cramp in my RT calf and foot. It’s like it wants to come on. My RT foot is really concerning me though. I believe there is atrophy in the instep and it’s like I feel my tendons in that area now when I walk, if that makes sense. Like the lack of muscle is putting extra pressure on the tendons, which they don’t like.

Yeah I understand what you mean, pre cramp feeling is probably a better way of describing it, that’s what I feel, it’s really tight

How are your forearm and wrist ares? Any atrophy? I’m noticing some atrophy in my right forearm. I’m right handed and most of my atrophy in general seems to be right sided. I bought a strength grip tester, so I could take my baseline and see if it gets worse. According to the tester, I fall into the “strong” range still, but my left and right hands are about the same, which I don’t think is real good

since I’m right hand dominant, so I’d think my right hand would be stronger. Further. I measured the circumference of my forearms at the biggest part. Left and right are exactly the same, but forearms are only 12 inches around, unflexed. I feel like both are smaller than they used to be, but I don’t have a baseline measurement from like a year ago.

I’ve been measuring my calf’s biceps ang thighs since the beginning! And they haven’t changed, but never my forearms, the left feels a lot weaker! But I don’t think there is any size difference, I’ll check tonight

im Not to stressed about measurements, as I believe fat can replace lost muscle, so I don’t think it’s a reliable way of tracking atrophy! Atrophy only gets bad once the muscle is getting zero supply, which seems to be the only way the emg picks up any abnormal readings

Like I keep saying, my left hand is getting more and more deformed because of muscle loss! I don’t what to do, I cannot believe the specialist isn’t following up and trying to figure out why it’s happening rather than dismissing it as an injury from over 20 years ago!

I got an appointment tomorrow, my palm is basically flat! I haven’t been giving much attention the last few weeks, just trying to get on with! I just put them side by side the left thumb muscle is just about gone, she has to take notice now! I’m 99.9 % I’m a gonna!!

Put it this way, if she doesn’t take notice, she needs to pack up a get a new career

I hear ya. The lack of taking medical problems like his seriously is sooo frustrating. It’s pretty much all docs I’ve dealt with.

So the doc said she noticed the atrophy on my left thumb and foot but said my emg was fine, so she wasn’t concerned, they put way to much faith in the emgs, she’s left as we will just keep an i eye on it, she wants to see me in March next year, so basically my body has to get worse before they care! What a joke

She also said that my foot atrophy could be from spraining it, even tho I told her I haven’t, it’s like I’m talking to a brick wall

Read this whole thread - really wish you guys the best.

I'm in virtually the same position.

In my early 20s, symptoms for 4 months, progressive weakness and atrophy of my arms/legs, fasiculations, among other symptoms. I now can't walk without feeling like my legs are buckling. My forearms have atrophied significantly.

Most people in my life + a few doctors think it's anxiety, especially those closest to me, which is incredibly frustrating.

Hey mate, sorry to hear you’re going through this, what exactly have the doctors said, what tests have you had?