MANinCT
Member
- Joined
- Apr 11, 2017
- Messages
- 18
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CT
- City
- Hartford
Good afternoon, I have a specific question which I'm hoping you can help me with. I've read many posts, etc. and sometimes they are "in line" and then sometimes you get a variation from what the mods and senior members post here so hopefully this will help me.
First, I do understand that many people come to this site with health anxiety, etc. and that no matter what you tell them "no ALS", etc. that they will be back. I also hope and think that my post will help some others out there.
That being said here's my story. Back in December of 2016 I started to have a weak and odd feeling in my right arm/hand like things are heavier, etc. Something in my mind said that this wasn't right as I had just heard about an associate of mine had been diagnosed with ALS so it was heavy in my mind. In fact, I feel like I dropped something I was holding that day which fueled all of the flames, etc. So I really struggled with this for months and finally saw my GP who did a neuro test (push/pull, strength, etc.) and said all was well. I even saw a PT and did some strength testing which was OK (but I didn't believe either of them).
Finally I had my GP make an appointment at a neuro for an EMG with needles and motor nerve study which came back normal (right leg and right arm). This was done almost a year ago (May 2017) to the day. I felt relieved when I left but I still had this "feeling in arm" that I couldn't shake and still do today which is why I came here for some pointed questions.
1) I understand that the EMG is the "gold standard" for ALS and that it will catch things way earlier than you can feel in your body. The question I have which may sound odd is if you had a clean EMG is there a time frame when that clean EMG "expires" and you should get another one? What I mean is that obviously I wouldn't look for another EMG a month or two after my clean EMG but do you look out a year, 2, 3 years where the EMG may have been do too early? The neuro that did my EMG said she spent a lot of time in an ALS clinic (she went to Harvard so I'm sure it was the Boston area) and she has done 10,000 or so, so I'm not worried about the results being inaccurate, just the time frame. She also said that most neuro's don't need to do an EMG when they see a patient for a few minutes as they can tell if somethings wrong. In fact, that's what mine said but she did one to alleviate my obvious anxiety.
2) I've also read (many times) that this is a disease of failing and not feeling so having a sore arm or an odd feeling in your arm is not ALS. Just something all of a sudden not working the way it has in the past is one symptom.
If I may take some liberty on all the posts I've read and maybe offer some light as to why people question and re question this. I think what happens is that people have this feeling and, like I have done, you start to focus on your finger or arm in every movement you make. For example, you try to pick up plates or glasses that you typically wouldn't do and when the tiniest of weakness occurs, it flares your anxiety and you think it must be ALS. Trust me, it can lead you into a huge hole to the point where you can't communicate with your kids, wife or work and you start to do strength tests all day. The problem is that no matter how many times you pass this test, it will never be enough to convince you that you're OK because the next time you grab your phone or go to hit a button and you miss it, you will flash back to that feeling and you're back down in the gully.
3) So over the last year I've "learned" a lot about this disease. Not only from my associate who has ALS but mostly from this site and I just turned 50 and feel like I'm in the prime of my life other than this feeling that keeps dragging me back here. After examining many posts I see that 9 times out of 10, I see there are 3 or 4 replies which means the following answers (some more terse and some with a gentle touch.)
"no nada nothing talks about ALS"
"go away you don't belong here"
"everything you say points away from ALS"
etc.....
The keys is when you see these answers, take them at that. I have made the mistake of searching other posts and see one remote reference that is out of context that leads me back down the rabbit hole and wondering if this could be me, etc.
So this post is both asking some questions to help me out and giving you a pretty educated persons view on this site. It's meant for people who can take advice from people who are knowledgeable about ALS from living with it and move on.
I wont lie, I have some anxieties or else I probably wouldn't be here. That being said, I'm still not exactly sure what is wrong with my arm as I do feel uncoordinated and weak (perceived) but as many people here are probably trying to do, put ALS out of my mind and move on. When I say that I mean the following.
Trying to go about your life and live. I'll give you an example. I had my birthday party this weekend and must admit that I had a few drinks (just turned 50). It was remarkably odd that while I was out having a good time and not ruminating (alcohol helped) I didn't have any feelings in my arm or fingers so what did that tell me? As with most people that are lurking on this site, a lot of this is in your mind like I hope it is for me.
Also, as we know ALS is rare but I think people who lurk here think it's more common because of all the traffic. You tend to see the same 6 or 7 people answer 300+ people who are looking on the site for the exact square peg into a square hole. The problem is that even if you spend days and weeks on this site you will probably never see your exact "symptoms" and the exact answer you want from a moderator or senior member so what happens it that you think "but what about this ache, twinge or twitch"?
To end, I'm hoping you can give me your opinions on the above question re: EMG's and maybe share this with people who are suffering by spending time on this site when they should be running, working, caring for your kids or just living.
Thanks
First, I do understand that many people come to this site with health anxiety, etc. and that no matter what you tell them "no ALS", etc. that they will be back. I also hope and think that my post will help some others out there.
That being said here's my story. Back in December of 2016 I started to have a weak and odd feeling in my right arm/hand like things are heavier, etc. Something in my mind said that this wasn't right as I had just heard about an associate of mine had been diagnosed with ALS so it was heavy in my mind. In fact, I feel like I dropped something I was holding that day which fueled all of the flames, etc. So I really struggled with this for months and finally saw my GP who did a neuro test (push/pull, strength, etc.) and said all was well. I even saw a PT and did some strength testing which was OK (but I didn't believe either of them).
Finally I had my GP make an appointment at a neuro for an EMG with needles and motor nerve study which came back normal (right leg and right arm). This was done almost a year ago (May 2017) to the day. I felt relieved when I left but I still had this "feeling in arm" that I couldn't shake and still do today which is why I came here for some pointed questions.
1) I understand that the EMG is the "gold standard" for ALS and that it will catch things way earlier than you can feel in your body. The question I have which may sound odd is if you had a clean EMG is there a time frame when that clean EMG "expires" and you should get another one? What I mean is that obviously I wouldn't look for another EMG a month or two after my clean EMG but do you look out a year, 2, 3 years where the EMG may have been do too early? The neuro that did my EMG said she spent a lot of time in an ALS clinic (she went to Harvard so I'm sure it was the Boston area) and she has done 10,000 or so, so I'm not worried about the results being inaccurate, just the time frame. She also said that most neuro's don't need to do an EMG when they see a patient for a few minutes as they can tell if somethings wrong. In fact, that's what mine said but she did one to alleviate my obvious anxiety.
2) I've also read (many times) that this is a disease of failing and not feeling so having a sore arm or an odd feeling in your arm is not ALS. Just something all of a sudden not working the way it has in the past is one symptom.
If I may take some liberty on all the posts I've read and maybe offer some light as to why people question and re question this. I think what happens is that people have this feeling and, like I have done, you start to focus on your finger or arm in every movement you make. For example, you try to pick up plates or glasses that you typically wouldn't do and when the tiniest of weakness occurs, it flares your anxiety and you think it must be ALS. Trust me, it can lead you into a huge hole to the point where you can't communicate with your kids, wife or work and you start to do strength tests all day. The problem is that no matter how many times you pass this test, it will never be enough to convince you that you're OK because the next time you grab your phone or go to hit a button and you miss it, you will flash back to that feeling and you're back down in the gully.
3) So over the last year I've "learned" a lot about this disease. Not only from my associate who has ALS but mostly from this site and I just turned 50 and feel like I'm in the prime of my life other than this feeling that keeps dragging me back here. After examining many posts I see that 9 times out of 10, I see there are 3 or 4 replies which means the following answers (some more terse and some with a gentle touch.)
"no nada nothing talks about ALS"
"go away you don't belong here"
"everything you say points away from ALS"
etc.....
The keys is when you see these answers, take them at that. I have made the mistake of searching other posts and see one remote reference that is out of context that leads me back down the rabbit hole and wondering if this could be me, etc.
So this post is both asking some questions to help me out and giving you a pretty educated persons view on this site. It's meant for people who can take advice from people who are knowledgeable about ALS from living with it and move on.
I wont lie, I have some anxieties or else I probably wouldn't be here. That being said, I'm still not exactly sure what is wrong with my arm as I do feel uncoordinated and weak (perceived) but as many people here are probably trying to do, put ALS out of my mind and move on. When I say that I mean the following.
Trying to go about your life and live. I'll give you an example. I had my birthday party this weekend and must admit that I had a few drinks (just turned 50). It was remarkably odd that while I was out having a good time and not ruminating (alcohol helped) I didn't have any feelings in my arm or fingers so what did that tell me? As with most people that are lurking on this site, a lot of this is in your mind like I hope it is for me.
Also, as we know ALS is rare but I think people who lurk here think it's more common because of all the traffic. You tend to see the same 6 or 7 people answer 300+ people who are looking on the site for the exact square peg into a square hole. The problem is that even if you spend days and weeks on this site you will probably never see your exact "symptoms" and the exact answer you want from a moderator or senior member so what happens it that you think "but what about this ache, twinge or twitch"?
To end, I'm hoping you can give me your opinions on the above question re: EMG's and maybe share this with people who are suffering by spending time on this site when they should be running, working, caring for your kids or just living.
Thanks