Calf Atrophy?

Status
Not open for further replies.
Greg, I read your earlier posts and I think I can give a good answer to your concerns.

First, ALS at 22 would be exceedingly rare. It's an old person's disease.

Second, I didn't see atrophy in your calf. People are not symmetric. Maybe a doctor could see it.

Third, you mentioned a lot of sensory symptoms, weird feeling in a muscle, burning pains, etc. ALS doesn't do that.
In ALS, the motor nerves in your brain are destroyed one by one, so the muscles never get the signal to contract, and they just lay there limp and useless, paralyzed. They don't feel weak. They don't feel anything at all. They simply don't work anymore.

And there is no on-again, off-again weakness. ALS weakness never gets better the next day.

Ask your primary doctor to test you for weakness. It's a very simple but surprisingly thorough exam that can tell you if you're having "clinical" weakness, which would be cause for concern. Clinical weakness has MANY causes; almost none of them are fatal.

See your doc to calm your mind and put this to rest. But don't worry about ALS.
 
Thanks for the reply Atsugi. Very helpful. I have a few questions regarding atrophy in ALS if anyone on here is willing to answer. Unfortunately my weakness has worsened and my neurologist noticed some dorsiflexion weakness as well. No weakness (clinically) anywhere else.

- In ALS, by the time a limb is showing atrophy, will the atrophy likely be accompanied by hyperreflexia as well?
- Clinically, how different (measurement wise) does one limb have to be to consider atrophy?
- Will an EMG almost certainly pick up ALS by the time a limb has atrophied a bit?
- Last, how fast would ALS atrophy progress? Would the measurements stay the same for months, then shrink again? Or is it pretty fast?

Thanks
 
Hi Greg,

Since you have seen a neurologist, did you ask all of these questions to a specialist who actually examined you? That would be the best place for these answers.

Did you tell the neurologist that you fear ALS and what did the neuro say about any possibility of this being ALS?

An EMG will pick up ALS before there is any atrophy because this is not a muscular disease. What happens is the nerves die and it is their death that causes the muscles to die, so the EMG will show the problems happening in the nerves right from the very start.

We can't give a timeline as it progresses so differently in speed. Atsugi's wife and my husband were dead well under a year after diagnosis. Other people live for years with atrophy and the associated issues happening very slowly. However they have clinically significant symptoms and there is no doubt what is happening to them.

I would suggest you contact your neuro if you haven't asked specifically about your fears and have them addressed.

We only know ALS and I've read all the posts you have made here over the past months and while there is something going on, it doesn't sound like ALS.

The best thing we can do is address what you report to us. If we try to describe to you what ALS would be like, what happens is it makes you look for that and start to believe those things are happening and so reinforces your fears. Your own neuro is the best person to really talk your fears through with.
 
Hi affected, my neuro seems kind of perplexed by my case. My EMG was clean, though it wasn't an extensive EMG. A quick needle here, needle there. He actually almost didn't go through with the EMG after I had already done my ncv. But decided to do it anyway. I didn't show him the atrophy I believe I have. And actually the last time I saw him, he checked my dorsiflexion strength again and it seemed good, though he didn't say anything. He said at the end of the appointment, more tests. But his hunch is a "benign phenomenon". What ever the hell that means.

He told me not to fear ALS at this time.
 
Affected, would you happen to know whether hyperreflexia typically accompanies atrophy?
 
Tillie is absolutely right. At this point, further technical questions should go to your doctor for the specific answers that would satisfy you.

But Greg, I have good news. The neurologist examined you and decided there's nothing neurological going on that is worth worrying about.

Doctors are really smart. They're very good observers, too. (My wife was a doctor for twenty years.) They normally don't bother to explain their thought processes to patients because you couldn't possibly understand the underlying science without years of training.

All healthy people have benign phenomena from time to time (or permanently). I'm perfectly healthy, myself, but many parts of my body twitch every day. It's funny to look at. Your hyperreflexia didn't alarm your neuro. Some people just have hyper reflexes.

You asked about atrophy. It would help to understand the ALS process. Remember, in ALS, first the motor nerves in the brain and brain stem are destroyed, then the corresponding muscles no longer contract, and finally, the limp, unexercised muscles atrophy because they been totally unused, cut off from their nerve supply, for many weeks or months.

So first you would have a bad EMG, then later, obvious clinical weakness, and eventually you might see atrophy. Some ALS patients say they look like Holocaust survivors. My own wife's atrophy was hardly visible, because she was paralyzed for less than a year.

In your case, the EMG showed no problem with the motor nerves, the clinical exam showed no problem with clinical weakness to worry about, and the neurologist noticed no atrophy that concerned him. It doesn't get any better than that.

Trust me, a doctor is not going to put his license on the line if he suspects any possibility of a deadly disease.

If there is something wrong with you, you should return to your GP doctor and trust her to lead your health investigations, using whatever specialists she decides are needed.
 
Affected, would you happen to know whether hyperreflexia typically accompanies atrophy?

Atrophied muscles can't flex, they're "dead."

>>>"his hunch is a "benign phenomenon". What ever the hell that means."

Means that whatever it is, isn't a problem.
 
But his hunch is a "benign phenomenon". What ever the hell that means.

He told me not to fear ALS at this time.

OK I will make one more reply and you don't need to answer, you need to work with your doctors now. Staying away from here and not posting is the best thing you can do for yourself now. Asking was a good thing to do, but you have to accept our answers or go elsewhere :)

Your quote above says it all - you are fearing ALS and this is your main issue. We can't help beyond the fact we have told you ALS does not happen this way.

As I said in my first answer mate - we don't tell you what would happen, we respond to your symptoms. So far as hyperreflexia and atrophy - don't sweat all this anymore, or go back to your neuro and seek answers. We have helped to the extent we can.

I sincerely wish you all the best in solving your benign condition.
 
Hi guys,

I think one of my posts was misunderstood. I am not hyperreflexic, I was just wondering whether or not hyperreflexia typically accompanies atrophy. As in, by the time you're having atrophy, your reflexes would be increased as well. I remember reading something like that somewhere. That atrophied limbs are usually also hyperreflexic.

Really, what worries me most is the dorsiflexion weakness my Dr. mentioned 2 visits ago. If something was benign why is he noticing clinical weakness? And yet at the same time he tells me he suspects benign phenomenon but also refers me to another neurologist, perhaps as a second opinion. I don't know it just seems strange.

I guess all I can do now is wait
 
Greg, you've been given extensive and detailed answers here, and the folks who've taken the time to do that have asked you to stop and trust your doctors. We don't advise people to stay away from ALS sites lightly. We do it if we think obsessing over ALS is bad for them. If we thought you had it we'd be telling to you keep us posted. Obviously if we are wrong you are welcome back, but right now you may be talking yourself into a horrific diagnosis that should be the last thing on your mind.

It's also not just about you. We are a group of people whose lives HAVE been taken over by this monster. We really don't have the time or energy (physical, mental, or emotional) to help dealing with other issues. Our people with ALS struggle to read and respond to short posts. The rest of us are doing all we can to support them, survive the journey, or recover from it while helping others. Tillie and Atsugi are two of our most senior members. They are trying to support us while recovering and rebuilding their lves. Please respect their advice to leave this forum and trust your doctors, and celebrate knowing that limbo is better than this awful disease. You are more fortuante than anyone else here, whether you believe us or not.

Best of luck to you. Again, as Tillie said, no need to respond.
 
Status
Not open for further replies.
Back
Top