Symptoms for years - recently terrified. Please help.

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Joe2021

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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.
 

ShiftKicker

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Hi Joe-

I'm hoping you have a read here: Read Before Posting

In it you'll note that it states sensory issues point away from ALS. Numbness indicates some another issue, and you absolutely should be pursuing that, as it sounds like it's affecting you quite negatively. Are you continuing to work with your doctor about next steps? It's not clear if a neuro is necessary, so guidance from your primary caregiver is essential here.

And yes, an EMG can definitely differentiate. It's also important to understand there's a difference between being dismissed and being told "not ALS". That doesn't mean there's nothing wrong, only that they eliminated ALS as the cause of your symptoms.
 

Joe2021

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Hi, thank you, and I understand that. I forgot to mention I did have a brain MRI back in February when I had the EMG. It was clear. I was never told “no ALS” and I never asked about it as it wasn’t even on my radar until this progressed. He had prescribed me gabapentin and advised me to give it a couple of months. I have taken it steadily and it’s not helped. I did call the neuro but he was out of office already so hoping for a call back tomorrow. I guess my fear is that as I only had the hand/wrist symptoms when I had the EMG, ALS was not even on his radar since I was not having the symptoms I’m having now. I’m worried that it may be easily missed because of how slow symptoms have progressed and being focused only on the hands when it’s involving both upper arms and shoulders as well which were not tested.

Sorry for being “that guy” also, but is the twitching usually constant or isolated to small spots? It is in my shoulders and upper arms and almost feels like “shivering” only internal if that makes sense. Thank you again so much.
 

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The hallmark of ALS on EMG is specific abnormalities in many areas, not just those perceived as having issues. Evidently, you did not show that pattern. It would not be shocking if your hand issues affected how you used your arms, caused tension in your shoulders, etc.

Since you have a CTS diagnosis, you can ask for a hand therapy referral. You can discuss your arms with the hand therapist also.

There is no reason to think about ALS. Keeping a food/symptom diary may help your mucus issue, as may allergy meds or testing to illuminate any allergens.

Best,
Laurie
 

affected

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Fortunately when you have an EMG you don't have to remember to ask if it means no ALS or else they might not have told you.
Twitching means nothing.
Please return to your doctor for help, after years of this I'm sure you know that ALS is not on the radar.
 

Joe2021

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I appreciate all the information. I apologize, I’ve just been full of so much dread. At 28 this is terrifyingly abnormal and I just had no idea who to talk to. A couple more things and I will leave you all alone:

1) As far as “clinical weakness” goes, I have been increasingly less about to use my hands over the last couple years. At the beginning the muscles just got very sore/tired after using fir awhile- now, if I do something like use a screwdriver to put a screw in a hole, I have to stop in the middle. My hand just gets quickly to a point where it won’t work anymore. I stop for a minute and stretch it out and I usually can then finish. Does ALS ever progress this way slowly? Less agility over time until it’s gone?? Even carrying a jug of milk is tough and makes my hand shake.

2. When I stretch a certain way with my legs or arms, and bring them back to rest they will not go smoothly- they “skip” and jerk and shake as they return to the resting state (kind of like I am setting down something extremely heavy). I thought this was a sign of ALS due to the inconsistent firing/damaged neurons? It’s also made my hands clumsy and I sometimes drop things because of the shakiness.

3. Last one- I know people can have fasciculations without realizing it at first. Since they’re not constant, isn’t it possible that an EMG would not detect them if they’re not happening during the test itself??? They only started the last few weeks and have spread. They sometimes wake me up because my shoulders and right bicep are “vibrating” and shaking inside.

I am sorry to all and again I’m forever grateful for any responses. I’m terrified as it feels like my movement has become weak, jerky, and is declining.
 

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No, no, and no.

Best of luck to you and take good care.
 

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I'm so sorry you are in such fear, I hope that you can discuss this with your doctor and receive help.
To your last questions here:
1. no that is not what happens with ALS at all, so that is good news!
2. no, skipping, jerking and shakes are not ALS weakness either.
3. twitching, or fasciculations mean absolutely nothing, so don't sweat that either.

All the best working through this with your doctor.
 

Joe2021

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Thank you both so much I truly am grateful for the reassurance. If I may ask (it might alleviate some worry), what exactly is ALS weakness at the beginning? Is it being fine one day and waking up the next morning and realizing essentially overnight your hand stopped working or you could lift something yesterday and today it won’t work? Even in younger cases? I think my unfamiliarity with the weakness symptom is why I feel like the progressive loss of hand dexterity and fine motor skills with my hand are so alarming.. I was under the impression that that is how it starts.

I would also like to let you all know that once I am hopefully through this issue I plan on donating to ALS research and finding some way to contribute in a non-monetary way as well to care for PALS as well. Just my glimpse into this disease has made me completely aware of something that most people barely even know exists and that is tragic.
 

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That's the end of what we can do - please understand we are caring for the terminally ill at this forum.
 

lgelb

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To answer your question, it is more like you wake up and can no longer do something at all, not that you feel weaker over time. Nor does the EMG "miss" abnormal movement to the extent it reflects a nerve or muscle injury.

Gabapentin has its own side effects so if it's not helping, I would taper (with medical supervision if you are taking > 300mg daily) and stop.

From what you have said, a hand therapist remains your best bet for feeling better. There is no reason to chase ALS.
 

Joe2021

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Hello everyone- once again I appreciate the answers. I had an EMG yesterday- the doctor tested my right arm and right leg. He stated that it was normal and I had a huge feeling of relief.

However, I also had some blood work done when I was there from the orders my neurologist put in. My creatine phosphokinase (CPK) is elevated around 460 and that’s got me worried now as this is elevated in motor neuron disease. Is there any chance whatsoever (because if being early, only testing one side of my body, etc) that the high CPK could be indicative of ALS despite the EMG results? Or is that likely due to something else... my muscles are always sore/weak so I’m not surprised it’s elevated. I just want to make sure it is because of ANYTHING other than a MND.

I promise you all this is my last question and you have all helped me so very much. You are Saints.
 

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no. . It can bump from a mild injury you didn’t notice, a little extra activity/ exercise or if it was drawn after the emg from the emg itself Or a gazillion different things. Or just because
 

Bestfriends14

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My husband has regular bloodwork due to the medication he is on. His CPK is not elevated and he has ALS, so no, the two are not correlated.
 
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