KevXmas
New member
- Joined
- Dec 20, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- MB
- City
- WInnipeg
Hello,
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 als.ca.
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!
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 als.ca.
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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