Not sure what to do anymore.

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andonovj

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Dear all
I know that this qustion most probably has been answered by now many times, but they say that ALS can start and appear in many different ways, so I am sorry again to bother you.
I am 33 years old IT guy and from July 2022 I started noticing a strange feeling in my left arm and left leg. I started to have occasional fascticulation later on my left leg. I started reading about ALS and I was extremely scared and worried. Before 2-3 weeks, I couldn't move my left pinky up for 1-2 days (now it is almost normal). I don't have cramps as well.
I did two EMG/NCV and they showed only some minor problems in my spine, but nothing pathological (according to the lab).
My neurologist also didn't see anything on the examination. My CK levels were initially normal, but then on 03 of September they were 8x the upper limit and on 12 of September they were 1.8x the upper limit.
My fasticulations are not constant, they are more in the morning and occasional., they are also mainly on my left leg.
My question is: Did your fascticulations were also occasional at the begining or they were constant ? Also, did you have cramps all over the body or only on the side of the onset.

Once again, I am sorry to bother you, but I am extremely worried.
Best regards
Julien Andonov
 

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Please read this very carefully as it answers all your questions.
Twitching and cramps mean nothing.
You have already been cleared of ALS. Return to your doctor for advice.
 

andonovj

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Thank you, I read that, but I still cannot believe that you don't feel anything prior muscle stop moving. I have a feeling that my leg will fall down any time I go out to walk :( I feel it light and almost lost but I can move it.
Can you please tell me if you felt anything prior movement loss ? Any strange feeling whatsoever :( ?
Sorry to bother you and really thank you for the information.
 

lgelb

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No, these feelings do not mean anything. Think how tired you are after a long walk or when you wake up. You might feel like you can barely move. But you actually can once your mind tells you to.

You may want to see a rheumatologist to make sure the shifting CK levels don't suggest any problems, but for sure, ALS is not something to worry about.
 

ReginaS

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You might be describing the opposite of what happens w. ALS: My PALS was a super careful person - definitely not a risk taker, and not as risk taker with ALS weaknesses either. If he had had any inkling for what was happening next he would have certainly avoided his falls. He had no advance notice when muscles were overall too weak to do the next thing. Once he went up a set of steps and and fell down backwards, head first that same set of steps. He did not think it was dangerous for him in any way when he started going up otherwise he would have avoided it. There is no feeling that gives advance notice. Same thing with a walker. He thought he could still do it - it had worked for a while and one day he fell backwards and really hurt himself.
 

Bestfriends14

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Of course you cannot believe that someone with ALS has no forewarning to muscle failure. That's because you don't evidence ALS, so how could you know? "Strange feelings" before muscle failure does not describe ALS whatsoever. If there were, so many PALS would not injure themselves when their muscles do fail.

Great news is, you don't need to be here worrying, and that's fantastic.

Take good care
 

andonovj

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Thank you guys, really thank you. I am freaking out, becauses of these fasciculations and that "Feeling" of weakness, but this calms me down. You are a life savers and I really wish you the best. On 4th I have my 3rd EMG, if that shows all fine, I will contact my Neurologist asking him to send me somewhere else.
P.S. My CK levels were 8x the upper limit last month and last week 1.8x higher, I have seen sometimes ALS causes CK levels to raise, but that is in slow progressors and I guess after muscle atrophy which would've been detected on the fisrt two EMGs (I assume).
Once again, thank you very much, really.
 

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Wow, you don't believe us?
You need to take this elsewhere - you cannot possibly think it is OK to argue against the terminally ill and their carers.
Enough is enough.
 

andonovj

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I don't want to argue and I am sorry if it appeared so. I am just scared. My weakness is progressing or at least I feel it progressing. I can still do everything normally, but my leg feels very week. That being said, I believe if it was pathological it would've showed on the EMG. The only thing is if it PLS, but then I would've other symptoms as well I assume. I will keep you in touch guys what will be on 4th. Thank you once again :)
 

andonovj

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Ciao guys
Today I was on my 3rd EMG, very detailed one and the doctor did her best.
In a nutshell, she didn't see anything that supports ALS or MND. BUT she found slight chronic neuropathy/radicolopathy in C7/C8 in the elbow area (although I feel the same in the left foot, so most probably it is also there or it is linked) I wrote to my neurologist if we can do MRI to rule our some oncological formations of the spine.

Thank you once again and I hope that this will help someone.

Best regards and all the best :)
 

andonovj

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Ciao guys
I am sorry again, but my symptoms are getting worse and worse :( Despite 2 EMGs telling me that there is no evidence of ALS and 1 telling me that there is neuropathy/radicolopathy, my doctor didn't want to proceed any further and I am worried.
I am barely able to move my ring finger and my pinkie on both left arm and left leg. I know that ipsilateral progression of ALS is rare, but I have seen some cases.
Another interesting thing which I discovered is that, when I drink Alcohol, my entire left side feels strange and numb. Did you guys also have such experience ?
Also, I know that a lot of people with ALS are wrongly diagnozed with Radiculopathy in the early stages, however I don't know if that is with or without EMG.
 

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Nope, time for you to see your doctor. If you don't think your doctor is right, see a new one.
We can't help further - you are cleared of ALS. There a hundreds of other things that could be happening.
I truly wish you the best in returning to full health, please stop pursuing this here, no more messages we will not argue this further.
 

lgelb

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Everything you think you have written that you "know" about ALS is wrong. I'm not going to run through what and why, because it would be repetitive and you're not listening. You don't have it and nothing you are writing about relates to it.

As regards alcohol and numbness, if you are on other medications, licensed or otherwise, many do not work well with alcohol. For your own safety, please keep that in mind.

I hope you decide to work with your doctors on the problems that are in front of you. Radiculopathy is real and can be treated.

If you need new doctors, get them, but be willing to listen to what they have to suggest.

I'm closing this thread. Please do not start another.
 
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