MANinCT
Member
- Joined
- Apr 11, 2017
- Messages
- 18
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CT
- City
- Hartford
I've spent some time looking at some threads, etc. but wanted to pose a question or two.
My issue started a few months ago (Jan) where I was at lunch and a glass slid from my hand which typically I wouldn't think too much about. I then got home and poked around and did some research as I have a friend who was recently diagnosed with ALS so it was on my mind. My friend was in his 40's. I'm not saying I'm a hypochondriac but I started to notice a pain in my right arm and I do have some twitching in my legs (both) and just had one in my shoulder. So here's a few questions that maybe will help me get things into perspective.
1) I have looked at a few websites and see that the occurrence of ALS in anyone is 1 or 2 in 100000 but other websites go as low as 1 in 1000 which are still pretty low. Do you have any idea of why there is such a disparity?
2) From reading the posts, I see you have twitching as "nothing to worry about" as it's common. However this is also one of a few initial symptoms of ALS with clinical weakness. Does that mean that, for example, I can't pick up a coffee cup or do a toe raise (meaning clinical weakness) that I should be concerned? I guess what I'm asking is that you're saying twitching is something that I would have after the muscle dies so I would definitely know that my muscle has died and then get clinical weakness and then get the twitching. I read that twitching is seldom if ever the initial symptom of ALS.
3) I see that in your posts that many people explain all the symptoms to you and you come back with very definitive ("its not ALS") or something on those lines. I tend to trust people who have been through this or are going through it more than some web site that just spits our stats, etc. but just wanted your take on how you can be so definitive on these type of things. One of the reasons I ask is that other websites specifically say that symptoms are pretty subtle to start and may not be noticed whereas the people here state that its more black and white and words like "you would know if you had it" . This is confusing to me so I apologize if I'm misreading it.
4) I know this is a dumb question but I have to get it out there. So this first issue that came up was back in Jan of 2016. Wouldn't there be some type of progression over 4 months or so that would make me sure that something was wrong?
I had my physical with my MD last month and he did strength tests like a neuro would do where you press down on his palms and toe walk, etc. and he didn't mention anything to me. I emailed him last night and he says its very unlikely as it's such a rare disease but I'm going to go in for an NCV in a few weeks. Would it be possible to do an NCV and an EMG at the same time?
Thanks for your time, I appreciate whatever feedback you can provide.
By the way, I'm 48 not that it has too much to do with it as I know this disease can hit at any age but from what I've read it looks more like people in their 60's
P.s. I don't really have anyone I can ask about this that has extensive knowledge about this so wanted to real world assistance from you all if you'd be so kind. I do agree that symptoms can magnify by looking at different websites, etc.which I think has happened to me but the twitching thing has be worried at best.
Thank you again.
My issue started a few months ago (Jan) where I was at lunch and a glass slid from my hand which typically I wouldn't think too much about. I then got home and poked around and did some research as I have a friend who was recently diagnosed with ALS so it was on my mind. My friend was in his 40's. I'm not saying I'm a hypochondriac but I started to notice a pain in my right arm and I do have some twitching in my legs (both) and just had one in my shoulder. So here's a few questions that maybe will help me get things into perspective.
1) I have looked at a few websites and see that the occurrence of ALS in anyone is 1 or 2 in 100000 but other websites go as low as 1 in 1000 which are still pretty low. Do you have any idea of why there is such a disparity?
2) From reading the posts, I see you have twitching as "nothing to worry about" as it's common. However this is also one of a few initial symptoms of ALS with clinical weakness. Does that mean that, for example, I can't pick up a coffee cup or do a toe raise (meaning clinical weakness) that I should be concerned? I guess what I'm asking is that you're saying twitching is something that I would have after the muscle dies so I would definitely know that my muscle has died and then get clinical weakness and then get the twitching. I read that twitching is seldom if ever the initial symptom of ALS.
3) I see that in your posts that many people explain all the symptoms to you and you come back with very definitive ("its not ALS") or something on those lines. I tend to trust people who have been through this or are going through it more than some web site that just spits our stats, etc. but just wanted your take on how you can be so definitive on these type of things. One of the reasons I ask is that other websites specifically say that symptoms are pretty subtle to start and may not be noticed whereas the people here state that its more black and white and words like "you would know if you had it" . This is confusing to me so I apologize if I'm misreading it.
4) I know this is a dumb question but I have to get it out there. So this first issue that came up was back in Jan of 2016. Wouldn't there be some type of progression over 4 months or so that would make me sure that something was wrong?
I had my physical with my MD last month and he did strength tests like a neuro would do where you press down on his palms and toe walk, etc. and he didn't mention anything to me. I emailed him last night and he says its very unlikely as it's such a rare disease but I'm going to go in for an NCV in a few weeks. Would it be possible to do an NCV and an EMG at the same time?
Thanks for your time, I appreciate whatever feedback you can provide.
By the way, I'm 48 not that it has too much to do with it as I know this disease can hit at any age but from what I've read it looks more like people in their 60's
P.s. I don't really have anyone I can ask about this that has extensive knowledge about this so wanted to real world assistance from you all if you'd be so kind. I do agree that symptoms can magnify by looking at different websites, etc.which I think has happened to me but the twitching thing has be worried at best.
Thank you again.