Scared about different information

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New member
Dec 20, 2022
Learn about ALS

First a bit of information about me. I am male, 40 years old in Canada and have been generally healthy up until this point. Here's some information about my symptoms and although I read the "READ BEFORE POSTING! Answers to common concerns about possible symptoms" thread which gave me a ton of relief, I'm concerned this is still ALS.

1) October 21 - I had a vasectomy.

2) October 30 - I started to feel a numbness/tingling in my left foot/leg up to my knee and a bit on my left hand. I understand this is not a sign of ALS. I went to the ER. They did an EKG, and CT scan and both came back fine. They did notice increased reflexes in my right knee.

3) Between Oct 30 - and November 7: I've noticed excess saliva that hasn't gone away to this date and a "lump" in my throat that comes and goes.

3) November 7 - I started to feel twitches all over my body (not on the face until recently but still more everywhere else on the body and not the face) along with the numbness/tingling. I went back to the ER and basically told me it was anxiety. They prescribed me Quetiapine (25mg x2) to help me sleep since I wasn't sleeping and worrying about this.

4) Starting early November (after the 7th) I was finally able to see my regular doctor. I have been seeing her weekly since this date. She also noticed increased reflexes in my right knee plus a bit of "pulsating" of my left foot after they circle the ankle a few times (sorry don't know the technical term for this). She understood how stressed I was and was able to get me to see a Neurologist at the hospital on November 14. At this point it was still just numbing/tingling feeling. I call it that but it might also be called a "tightness". The neuro said he didn't think it was ALS and would send me for an MRI.

5) I had an MRI of the upper spine and brain on November 16. It was reviewed by Neuro and was fine. The radiologist said he might have saw a very mild inflammation on the lower spine so wanted a closer look at that. Neuro didn't think it was anything.

6) It was around mid to late November that the tingling was mostly gone (except for a few stints of it for 5+ minutes at a time, here and there) but I started to get sore legs. This has seemed to progress to all different muscles in the legs and arms and continues to do so. It also seems to be getting worse. I notice it as when carrying things that used to be no problem. For example, carrying 2 empty boxes 25 feet cause my triceps to burn, hold my phone up to record a 5 minute video of my kid creates a soreness/burning in my arm. But I don't have any what you describe as "clinical weakness" where I can't use a muscle at all.

7) I had the 2nd MRI of my lower spine on December 3 which also came up fine.

8) My doctor referred me to get my EMG studies done. This was done by a Doctor who is certified in EMG (nerve testing) by the Canadian Society of Clinical Neurophysiologists, but he is not a neurologist. He said the EMG was clear and this was not ALS.

So with everything coming up clean, I'm still have the sore/weak muscles that seems to be getting worse, spasms, excess saliva and a lump in my throat that comes and goes.

My concerns are:

1) I have not yet been able to see a Neurologist since the very short visit in the ER and my symptoms seem to be getting worse.

2) While your post "READ BEFORE POSTING! Answers to common concerns about possible symptoms" makes me extremely happy to read because I don't have any "clinical weakness" where I can't move a muscle, I worry that my sore muscles with eventually get to that point. It makes me so confused on why a reputable site like Symptoms – ALS Society of Canada talks about "Feeling Weak" as being a symptom and that is exactly what I feel with my muscles right now. They are sore and weak and cannot say lift my phone to record something for more than 5 minutes. Not to mention I also have very limited "muscle cramping" and constant "muscle twitching" which they also list as symptoms, but your site states ALS is about "failure" not "feeling" which contradicts what I'm reading on

3) I have been tested for a ton of things through multiple blood tests, CT scan, EKG, MRI x2, EMG, etc and there are no answers, could it still be ALS?

4) ALS sites also state it could take 8-12 months to diagnose ALS. Is this in combination with my fears of my muscles are sore and weak right now and will only get weaker to a point of 'clinical weakness' and that is why it takes so long to diagnose?

As you see, my journey through this so far has been quite rapid so far (Oct 30-Dec 20) and I wonder if that is why I'm not diagnosed and as my symptoms get worse and get to 'clinical weakness' is when I'll be diagnosed?

Any help/advice is appreciated!
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No, I don't think you're headed for an ALS diagnosis.

I would be cautious about continuing to use quetiapine, a powerful psychiatric drug, for sleep. I would ask about tapering off. If you really can't sleep without it, that would be time for some counseling by my lights.

The reports around delayed diagnosis really do not relate to you, and I agree that it's pointless to parse the array of misinformation about ALS on line. My advice is to stop reading.

Whatever your problem is, it seems more systemic if anything. Did you ever have COVID or another serious virus? I would consider seeing a rheumatologist.
I think it would be fairly safe to say that whatever is going on is not ALS. Everything you report happening points away from it as do you test results.
I'm not sure what made you jump to grabbing this disease and trying to hold to it despite being told it is not, but I hope you get answers soon.
We will stick to what we wrote in the READ BEFORE POSTING entry as we wrote our own despite what you might google and find elsewhere.
All the very best.
Thank you both for the responses. I am seeing my regular doctor again this afternoon for my weekly follow up. I'll mention the rheumatologist and see what she says. I was on a very low dose of quetiapine and I have stopped taking it (at the advice of my doctor) as of Dec 13.

I did have COVID but it was in back in March of this year and I only had minor cold like symptoms for 4-5 days or so.

I'm not sure what exactly got my brain on ALS but I'm sure it was googling my symptoms and seeing them line up with reputable site's defintions of symptoms.

My doctor has referred me to a physciatrist which I see on Jan 18.
Have a read here with regards to Covid, even mild, and odd symptoms. Not to say that's what the issue is, but to provide you some info.
Self-diagnosing by reading online is so dangerous as if you have no medical training you can't really interpret what you are reading, let alone translate that against what you think is happening or that you are feeling. Good luck with your upcoming appointments.
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