Weird Symptoms please help

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C12345

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Hello, I’m struggling w very strange symptoms.

Early October I awoke w really heavy arms and pain and that moved to my legs. I thought I may be COVID but no positive test. It continued and then started to get jerks and twitches in left leg. Concerned I got blood tests, negative for RA, lupus etc. I had two mris that showed pretty much nothing some cervical disk herniation but nothing that would cause symptoms. Twitches continues to get worse and now have a weakness on my left side, face, legs, arms.

I had an EMG Oct. 22 and came back normal. Fast forward to now, I have lost a significant amount of weight for no reason. Muscles in left side smaller and hard to sit up straight without pain. I wake up w stiffness in muscles and constant twitching. I am getting another emg soon but the doctor wants me to wait 2 weeks.

Does any of this sound familiar?
 

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Sorry to hear you are unwell.
Do you have clinical weakness, or you feel you are weaker?
There is no reason to repeat an EMG. Are you being seen by a neurologist?
Try reading through this

What do your doctors say is the most likely issue?
It sure doesn't sound like how ALS would happen.
 

C12345

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Thank you for your response. They don’t know what’s wrong…..They want to wait and see. But my weight loss, weakness (more in left), clonus and twitches alll suggest ALS. My muscles also fatigue very easily.

I am trying to stay positive and live my life but feel like walls are caving in as I am 30. I know usually there’s not a lot of pain or a weakness in one limb before spreads to entire left side of body. I guess I can only take another EMG and see.
 

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No, your symptoms don't sound familiar at all. ALS typically starts in a foot or a hand, not in entire limbs or an entire side of the body. Further, when one loses the ability to stand on their toes or heels, do up zippers or buttons (depending on where it starts), it is a painless loss. There's not a feeling of "my muscles feel tired".

The great news is that your EMG came back normal, and your second one is in 2 weeks, which I'm optimistic will be normal as well. Letting your world fall apart for something unconfirmed is a choice you make. You can live your life and be grateful that your symptoms and clean EMG point away from ALS, or you can let your walls cave in. The choice is yours.

2 weeks is not far away. Please come back and update when you get the results in from your second EMG.

Until then, good luck.
 
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But your symptoms don't match ALS nor suggest ALS in the least - you see by the time you have clinical weakness and twitching, the EMG is off in many areas of the body. So doing another EMG already is probably due to your high level of anxiety and refusal to believe the tests done so far.

I would suggest you have some really honest talks with your doctor, ones where your doctor talks more than you do, as I'm sorry but I get the feeling your doctors are not concerned about anything sinister like you are.
 

Clearwater AL

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C12345, as you wrote…

“But my weight loss, weakness (more in left), clonus and twitches all suggest ALS.”

After closely reading over your thread and the replies by very ALS knowledgeable
members I’d say you’re thinking "it all suggests ALS." Clonus is a Neurologists
determination from a foot or an arm. Jerks are not clonus.

Finally, being only 30 years old… the odds of it not being ALS are so much in
your favor. And… having a normal EMG less than a month ago increase the
odds even more you do not have ALS.

You’re going for a second EMG in two weeks… until then stop Googling and
try not to search old threads here over the next two weeks trying to find
more “suggestions” you may have ALS. You’ll probably end up doubting the
next EMG if you do.

After the next EMG post the Summary/Conclusion at the bottom of the
EMG report.

Until then…
 

C12345

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Thank you all for your help and I agree doesnt "sound" like ALS but I have now lost 4 pounds in 5 days, myoclonic jerks, and muscle fibrillation continue. My muscles feel as if they are releasing. Don't see fasciculations as much. I am going to do another EMG on 30th but I'm almost certain it is muscle loss thats contributing to the weight loss.


I see some people start to notice muscle fatigue and weight loss with fasiculations as a first symptom. Any insight here?
 

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The 30th is not far away. Please come back and update when you get the results in from your second. Nothing you've posted sounds like ALS. If you could be respectful to the members here and read your replies, that would cause less trouble for the members who have generously already answered your questions.

Please post back AFTER your EMG to update the forum.
 

Nikki J

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You don’t feel muscle fibrillations. They are only something seen on emg. Those are twitches of some form.
 

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Nope, I'm pretty sure you didn't read the link I sent you carefully, but spend lots of time reading other anxious posts here.
Just stop a moment and think about how little sense that makes.
We worked together to make this post to give clear and accurate information.
Anxious posters throw all kinds of symptoms at the wall trying to make stuff stick.

ALS onset is not muscle fatigue, weight loss and twitching.
ALS is a disease of the brain and spinal cord and starts with failure of muscles while the person feels totally normal.

I suggest you read the link I've included again, and then stay off here until you return with the EMG results. That is honestly the best thing you can do for yourself.
 

C12345

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Thank you all for your replies. I still have not had second emg but my left side is very weak, noticed foot drop and feel it in my face when I smile. I also have been having trouble breathing. Also noticing my small legs and arms.
 

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Question - are these confirmed clinical weaknesses diagnosed by a doctor, or things you are noticing and feeling?
 

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You have drop foot? So, your doctor confirmed this, and you now need to walk with a walking aid?
 

C12345

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These are all symptoms I’m noticing, entire left side weak and my hands cramping up. Currently feel like having trouble breathing.
 

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Hi there. It's not clear you've read the Read Before Posting link yet. What people here are asking you is if your doctor has observed clinical weakness (which is defined in the link) and is different than feeling weak. Objective clinical findings by a doctor is very different from subjective impressions by people worried about a disease they've read about online.

However, there's really not much more folk here can do for you. You have another appointment coming up which will provide you answers. Coming on to a forum for people with ALS and speculating about things is a really unhealthy approach. It's hard to wait, but wait you must. It will only be a few more days- please refrain from posting til you have more information and actual test results.
 
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