Having a really hard time - afraid of ALS

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worriedJo

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I’m 40 years old.
I'm having a really hard time.
I haven’t shared my fears with anyone, so far.
I have an appointment with a neuro in 2 weeks.

I keep repeating to myself what I've read several times around the forum:
“ALS is about failing, not feeling”... And so far, there is nothing I 'can't do'. I can walk, stand on my toes, button my shirt… But there’s definitely something wrong with me, and I fear it is ALS.

It started back in June/July. Back then it was this feeling of ‘instability’. My legs didn’t feel ‘firm’. They felt week and instable. Sometimes I had these episodes of leg stiffness.
I had a cervical discectomy about a month ago (late August) because spinal compression at C4-C5 and nerve root compression. So far I feel no improvement to the leg symptoms. The leg 'stiffness' is worse. I've heard of several cases of ALS symptoms being confused with cervical myelopathy and I am terribly scared it is my case.

I don't know what to call it (English is not my native language), but my legs feel very 'stiff' most of the time, sometimes the calves, other times the upper back leg... It’s worse on the right leg. I don't think they are leg cramps (I'm not sure about all these 'technical' terms), it feels like my legs are very, very tense, and I can't get them to relax. It eventually becomes painful... My muscles become sore. When it’s worse, the stiffness makes walking difficult and my legs feel weak.
Sometimes I get this ‘tension’/weakness feeling also on my arms, only not so strongly.

Now and then it seems to go away for a while (some hours), last Saturday I just had a really good day, I thought it had gone away… but then it comes back.

Has anybody diagnosed with ALS started with symptoms like these? I’m so scared.

Thank you in advance for the time spent reading my words.
 

Kosmoskatten

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I do not think this sounds like ALS, of your own remark, "ALS is about failing, not feeling."

Furthermore, from what I have learned, the only mimic to ALS in relation to cervical myelopathy is the form with muscle wasting. ( I fail to remember its name now, but I think it might be spondylotic amyotrophy.)

Try to keep calm, and trust your neurologist when visiting. We are no doctors here.
 

Atsugi

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I wouldn't worry about ALS if I were you. These symptoms could be anything. Relax. See your doctor.
 

nebrhahe53

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The fact that you say it goes away and comes back points away from ALS. With ALS, once the muscles are affected they never get better. Relax and if you are still worried, get an EMG from a neurologist who works at an ALS clinic. The EMG is the gold standard in determining ALS.
 

worriedJo

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Thank you so much to everyone that has responded.

I have read the ‘stickies’. I understand this is not how ALS usually presents. But I also learned that this disease is so different for each patient and it can be so different in starting symptoms and progression…

When I say it goes away and comes back, I mean the muscles don’t feel so tense and sore for some periods of time. But it is never gets completely OK. Standing is uncomfortable, especially if I try to support myself more with the right leg. It feels like I’m making this big effort.

Anyway, I know there’s nothing I can do apart from waiting for my doctor’s appointment… It just is so hard to wait (and on the other hand, I’m so scared to go there)… And sometimes it gets so difficult. Sometimes it feels like ALS makes perfect sense regarding my symptoms.

Thank you once more.
 

Mediasmart

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ALS makes no sense in light of your symptoms. Arguing with the doc and those who have responded only. Seems to re - enforce what want to believe.
 

nebrhahe53

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Just assume you don't have ALS. Why? Because there is absolutely nothing you can do if you do have it. Finding out earlier won't help you. If you have it you die, period. There is no treatment much less a cure. Dont make yourself miserable for no reason.
You are much more likely to die in a car accident-do you worry each time you get in a car?

I wish you well.
 

MaxEidswick

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Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
 
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