Joe2021
New member
- Joined
- Jul 25, 2021
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- OH
Hello all. First of all I want to begin by expressing my support for anyone diagnosed and struggling with this brutal disease, I truly am sorry and my heart hurts for you. I have a long list of issues that have led me the last few weeks to fear that ALS is a very real possibility at this point despite trying to ignore the reality.
I have read the stickies. I’m a 28 year old Caucasian male. Just about five years ago exactly, I started experiencing two chronic issues around the same time. First, my hands (initially my right only, then left about 6 months later) were becoming numb and sore all the time. When I say numb, I mean it feels like I have decreased sensation and they’re always stiff. I noticed while driving as I had to shift from using one hand to the other because after holding the steering wheel for a bit, it would get numb. This got worse when using them and a little better after giving them a break. At the same, my throat starting constantly needing cleared. An ENT told me acid reflux and sent me on the way but the meds never worked. I got used to constantly clearing my throat and always clearing mucus (especially during morning) and just stopped worrying. It’s normal for me now, constant mucus.
Fast forward 4+ years- my hands have gotten much worse but are still usable. They get extremely sore/fatigued with not much use. They stop working after lifting something heavy for a minute or even typing as long text message for example makes the muscle between my thumbs and first fingers (both sides) extremely sore and fatigued- it’s like going to a gym and lifting weight until your arms turn to jello. If I stop a little while, or shake my hands out to get some feeling back, etc then I eventually can start typing them again but they NEVER feel normal and are always fatigued. I feel this stiffness/numbness all the way up past my elbows. It has stopped me from doing things like working on cars, riding bikes, typing, etc because my hands just get too numb and sore so VERY quickly. I saw my GP back in 2019 and he suggested carpal tunnel. I even had carpal tunnel surgery in one hand back then and did nothing. Two years later and it’s just gotten worse.
5-6 months ago I saw a Neurologist who did an EMG. I told him about the bilateral carpal tunnel (had never been confirmed). He stated that the EMG/Nerve conduction was “mostly normal” with the exception of seeing mild carpal tunnel in one arm and moderate carpal tunnel in another. The problem is I had explained to him the numbness has been moving higher up into my shoulders. They are numb sometimes and I can feel the nerve pain down from both shoulders. Sometimes it feels heavy to lift my arms up because my shoulders feel stiff, but I can still do it. About 6 months ago, my feet started to go numb and still are. My GP tested me for diabetes but cleared me.
Here’s the scariest part for me: I know twitches are vague and can mean many things. The last 3 weeks or so, both of my arms have had twitching inside pretty much constantly. It feels like nerves firing constantly and comes and goes all day long but never stays gone long. My hands have a tremor when holding something like a phone or a fork for dinner, and I can visibly see my biceps twitching under my skin. It’s almost constantly. When I wake up, the pulsating in my biceps is the first thing I feel and I can see it happening. I did not even know this was a sign of ALS when they started.
Sorry for the extremely long post. I have left a message trying to schedule another EMG and appointment since it’s been 5 months. It seems like things have dramatically accelerated the last few months. Could I have had ALS all this time? Does an EMG differentiate between carpal tunnel and ALS? Does the four years of hand and forearm weakness and stiffness/numbness sound like ALS early stages? I’m so sorry for the length and grateful for any directions. The neuro will take a couple months where I’m at and I feel I often get dismissed because I’m still in my 20s.
Also I forgot to tell you all- I did have a brain MRI done back in January, all clear.
I have read the stickies. I’m a 28 year old Caucasian male. Just about five years ago exactly, I started experiencing two chronic issues around the same time. First, my hands (initially my right only, then left about 6 months later) were becoming numb and sore all the time. When I say numb, I mean it feels like I have decreased sensation and they’re always stiff. I noticed while driving as I had to shift from using one hand to the other because after holding the steering wheel for a bit, it would get numb. This got worse when using them and a little better after giving them a break. At the same, my throat starting constantly needing cleared. An ENT told me acid reflux and sent me on the way but the meds never worked. I got used to constantly clearing my throat and always clearing mucus (especially during morning) and just stopped worrying. It’s normal for me now, constant mucus.
Fast forward 4+ years- my hands have gotten much worse but are still usable. They get extremely sore/fatigued with not much use. They stop working after lifting something heavy for a minute or even typing as long text message for example makes the muscle between my thumbs and first fingers (both sides) extremely sore and fatigued- it’s like going to a gym and lifting weight until your arms turn to jello. If I stop a little while, or shake my hands out to get some feeling back, etc then I eventually can start typing them again but they NEVER feel normal and are always fatigued. I feel this stiffness/numbness all the way up past my elbows. It has stopped me from doing things like working on cars, riding bikes, typing, etc because my hands just get too numb and sore so VERY quickly. I saw my GP back in 2019 and he suggested carpal tunnel. I even had carpal tunnel surgery in one hand back then and did nothing. Two years later and it’s just gotten worse.
5-6 months ago I saw a Neurologist who did an EMG. I told him about the bilateral carpal tunnel (had never been confirmed). He stated that the EMG/Nerve conduction was “mostly normal” with the exception of seeing mild carpal tunnel in one arm and moderate carpal tunnel in another. The problem is I had explained to him the numbness has been moving higher up into my shoulders. They are numb sometimes and I can feel the nerve pain down from both shoulders. Sometimes it feels heavy to lift my arms up because my shoulders feel stiff, but I can still do it. About 6 months ago, my feet started to go numb and still are. My GP tested me for diabetes but cleared me.
Here’s the scariest part for me: I know twitches are vague and can mean many things. The last 3 weeks or so, both of my arms have had twitching inside pretty much constantly. It feels like nerves firing constantly and comes and goes all day long but never stays gone long. My hands have a tremor when holding something like a phone or a fork for dinner, and I can visibly see my biceps twitching under my skin. It’s almost constantly. When I wake up, the pulsating in my biceps is the first thing I feel and I can see it happening. I did not even know this was a sign of ALS when they started.
Sorry for the extremely long post. I have left a message trying to schedule another EMG and appointment since it’s been 5 months. It seems like things have dramatically accelerated the last few months. Could I have had ALS all this time? Does an EMG differentiate between carpal tunnel and ALS? Does the four years of hand and forearm weakness and stiffness/numbness sound like ALS early stages? I’m so sorry for the length and grateful for any directions. The neuro will take a couple months where I’m at and I feel I often get dismissed because I’m still in my 20s.
Also I forgot to tell you all- I did have a brain MRI done back in January, all clear.