Hand motor skills deteriorating for months, now muscles twitching. EMG shows nerve damage. What is this?!

[Leoppy]

Symptoms: From most definite/debilitating to least.

1. Very noticeable hand motor skill loss. Fumbling while trying to hold my phone, typos galore, can't smoothly move the mouse cursor around the computer screen, finding the seam to open ziplock bags or picking up something thin is harder. Stiffness/soreness sometimes extends up into lower arms - developed an ongoing "tennis elbow" type feeling in my left arm. I play guitar - that is much harder and I'm making way more mistakes. I notice myself holding things like toothbrush in very awkward positions and then suddenly needing/wanting to readjust. Depending on how I'm holding something now - my hands often start shaking unless they are steadied on something - as if they can't support the weight of the item themselves. This has been going on now for more than 6 months, less than one year. Ongoing but seemingly slowly worsening intensity and no period of reprieve.

2. More recently - brief, rapid fire, vibrating fasciculations in many body regions. Started lower back and eyelids, then spread to many regions in both legs and feet then abdomen. I'm twitching somewhere approx. hourly. No understandable pattern to what's twitching when, but generally at night and in the morning when laying down is the worst. Generally muscles actively in use or near actively used regions are not twitching. One month of this so far.

3. Wrists and ankles seem thinning in certain areas - veins are visible where they were not previously. Wrist tendons are more visible. Other muscles in the hand are bulging or "indented" where they weren't before. (Ex the muscle on the back of my hand between thumb and index is bulging).

4. Now that I'm good and freaked out, my voice sounds deeper to me but not noticeable by others. I've recently lost balance a few times (not normal for me) and almost fallen but been able to catch myself on the other foot. Lots of saliva. Drinking water is running down the side of my lips if I don't drink slowly/carefully. Hoping/likely these are entirely "freaking myself out" symptoms. But the lost motor skills and hand strength + twitching are definite.

Steps taken so far:
Got an EMG done in Dec, detected nerve damage coming from spine. That freaked me, but Neurologist doesn't suspect ALS, thinks this *might* be related to an abnormally narrow section of spinal canal not allowing enough fluid to surround the spinal cord and/or issue with disk C3/ C4 - shown in an MRI. But he didn't seem very sure of that at all. Neurosurgeon referral next month. But if that were the case - I'm not understanding the ongoing muscle twitching in other regions of my body not tied to that area of the spine.

Questions

1. How long do hand coordination and motor skill problems normally take to progress to a more complete lack of mobility? I can already notice changes to my abilities as clear as night and day, but still not to the point where I physically/completely "can't" do something. So my wife is having hard time understanding severity since she can't "see" it, and the quick, in office strength tests performed by the neurologists in my check ups (push my hands apart, follow my finger, balance when I push on you, etc etc) are not exposing the fine motor skill loss that I'm most struggling with.

2. Should I request a second EMG of the legs/a region not covered in the first EMG? And if that one also shows nerve damage - would that give a more clear sign of something less localized than a specific section of my spine/something to be more concerned about.

Thanks in advance. Really nervous. I can find things that would explain my issues in isolation, but the progression and combo and persistency of symptoms is what is scaring me.

 

[Nikki J]

If you can post the deidentified emg ( charts and summary) it would be helpful

1 progression in variable the question is unanswerable
2 I don’t know maybe seeing the emg would help answer. If surgery is recommended get a second opinion first

 

[Leoppy]

I have requested a copy of the results. Will upload next week when I receive.

 

[affected]

The EMG will really help us answer better.

It may seem like the neurologist just did a quick 'in office' hand check, but they are highly trained in how to do that test and it shows clinical weakness clearly. That is an ALS hallmark.

If you don't have clinical weakness things are not black and white. What I mean is that doesn't mean nothing is wrong, it isn't ALS or nothing.

Seeing the neurosurgeon is probably the next logical step and you can have specific questions ready in advance.
Like Nikki, I would then consider a second opinion if they say surgery is indicated.

 

[Leoppy]

Here are the EMG results. I see the note about polyneuropathy not being suspected, wondering: should I ask for Leg EMG where the twitching is most pronounced now?

If it's not ALS - really not sure what could be causing all of the twitches all over my body?

I've started to feel twitches in my facial muscles and today had my first involuntary jerk of my leg when my foot twitched more aggressively than the normal "vibrating" twitch im getting used to.

 

[lgelb]

Twitches feed on each other; we see this all the time. Try causing a fine tremor in your hands and see if you can make it show up other places.

Widespread twitching is not a sign of ALS and if it were signifying nerve or muscle damage in lots of places, as occurs in ALS, then lots of places in this table would be abnormal on EMG.

As the summary states, the only sites that are showing damage are at C5/C6/C7, suggesting that nerves in the neck area of your spinal column are causing problems with your arms on both sides. That suggests asking about PT and home exercises, too, as a typical first line before considering surgery, since evidently the MRI didn't show anything emergent.

You acknowledge being freaked out -- perfectly understandable -- but that frees the mind to basically trick the body into feeling all these changes that in turn freak you out more.

It can help to talk to someone about this and set up some ways to help your body re-learn what's real and what's not.

The super news: you don't belong here. If it is going to take an EMG of your lower limbs to see that, go for it rather than live your life in limbo, but there is no indication here, or seemingly from your neuro exam, for that additional test.

 

[affected]

The thing is that twitching means nothing. By far the huge bulk of people who twitch do not have ALS.
That EMG is great, and you don't need the legs done as if you did have ALS it would have shown here.

Now you need to sit down and talk this through with your doctor and follow their advice on what is next.

 

[Leoppy]

What's worrying me most is the duration and slow progression of symptoms im feeling.

Most other "is this ALS" threads I see involve a quick scare that goes away or lasts maybe a month or two.

This has been going on almost a year for me now and it's steadily getting worse and worse. At this point it's feeling clear to me that my hands (particularly fingers) are losing their ability to move. I already can't grip certain things in certain ways like I used to. (Ex: Holding my phone and scrolling with one hand - can't do it anymore). My typing is so much slower than it was six months ago. It's not a twitch here - it's a clear path I'm clearly slowly progressing down toward loss of function. It's extended to my arms which now feel weak all the time. I have not had failure in my arms yet. That's giving me some hope.

Then 3 months of twitching - progressively more pronounced and widespread in the last 1 month. It will not stop. The twitches can be seen - my muscles are actually contracting when it happens. Recently in the last week sometimes my whole arm or leg will jerk from a twitch.

Now in the last week my tongue is weak/"locked" sometimes, and is twitching a few times daily. I'm smacking my lips and needing to swallow more. Kissing my wife feels different. My voice is deeper, monotone, and I'm stumbling over my words.

I really don't know what this could be. I'm hopeful from the comments here but I'm also able to feel my body in a clear decline and at 31 that's not normal.

Maybe I should note that until the widespread twitches and tongue issues started - I did not suspect ALS. I was not "waiting" for these things - they happened fully on their own, THEN since I'd already had months and months of motor skill decline - I became worried about ALS.

Is it always the case that a full failure of something comes before twitching? Is failure always first in the limbs? Or could my hands be failing already?

I'm sorry for wasting people's time if this is not something to worry about. It's just been going on so clearly for so long.

 

[affected]

Not true - we have many people that come here and post about months and years of vague symptoms like yours and it is not ALS.

If you go read the sticky post again there are a huge number of things that could be going on.
It also answers the rest of your questions, so try to breath slowly and read slowly when you go there.

You are not displaying ALS symptoms. But that doesn't mean nothing is wrong. You need to keep going to your doctor and letting them keep directing the testing. I'm sorry that by reading posts we can't provide anything more, but honestly the evidence doesn't spell ALS.

 

[Leoppy]

Ive been reading for a post that resonates with my symptoms or posts that help make me feel like my symptoms couldnt result in ALS, and today - my heart and stomach fully dropped out when I found this one.
Its exactly what I am feeling and going thru. And it resulted in a diagnosis.

Started as hand weakness, presented as C7 spine issue, specifically NOT diagnosed as ALS, took about 9-12 months to develop - Ongoing weakness.
This is exactly what is happening to me.

I feel like I am on month 7-8 of this exact same journey. My right hand is working less every day - slowly but surely deteriorating in function.
Now I feel the twitches - most pronounced in my right foot - every single day my foot twitches for at least a few solid 5 minute periods.

I am terrified. Ive re-contacted my neurologist to ask for an EMG of my legs.

 

[lgelb]

The PALS whose thread you linked had a flaccid (unusable) 0/5 wrist/hand when he was diagnosed, so I don't think it's the same situation. And in ALS, strength does not wane a little each day. It's more like from can to can't do.

For anyone else tempted, reading posts to find out what does and does not seem like you is not a productive pursuit. Everyone has their own medical history; you are only seeing the tip of the iceberg in these posts.

Let us know how the EMG comes out.

 

[Bestfriends14]

It is entirely up to you if you want to see a correlation between you and the other poster. The fact of the matter is that there is no correlation. The other poster clearly has full failure that progressed. Not once does he go on and on about twitches and "feeling" weak. He simply has no more function of his wrist and fingers. You have not mentioned anything progressive in terms of clinical weakness I.e. failure. Twitches mean nothing.

 

[Leoppy]

"It started 9 months ago with painless left hand weakness/clumsiness in fingers." Then 9 months after the EMG identifies a C7 issue they had full loss of use.

My EMG was just 2 months ago - I can already see clear differences between my right and left lower arm/wrist/hand muscles.

Certain movements and "poses" in my right hand are already gone. Certain hand poses like holding a toothbrush or typing or cutting my food... the act of grasping things, particularly with my right hand is permanently changed. I can still get these things done - but they are happening differently - and are steadily harder. "Hand weakness/clumsiness" would be a very fitting description for my current state. And this did feel that it came out of nowhere. Like one day I woke up and my hands ability was just completely different.

Maybe twitching is the wrong word for what I'm feeling in my muscles - it's like something is vibrating in a concentrated area, eating away at the muscle in that spot. Sometimes in one area it can go on for 1-2 minutes straight, sometimes it will just be a rapid instance - like a quick bite at my muscle. I can see it if I'm looking at the right time or in longer last instances.

It's hard feeling so certain that I'm feeling something progress and not being able to explain it properly. Will keep posted as I continue to look into this with doctors.

 

[affected]

I don't think we can convince you. When this happens we just have to say that you can disagree with us, but we can't help further.
We are not here for you to argue back with us and dig up what you think will prove your stance.

Work with your doctors, and don't post back until you have a diagnosis as this is becoming really unhealthy for you to continue here.
I say this for your own sake.

 

[Leoppy]

I got my EMG yesterday of the legs. I wish they would have done an arm to show changes there from the first one 2 months ago.

Leg EMG was abnormal like the arms - the performer (not neurologist) stated that they didn't see widespread nerve damage, but did see localized issues in my lower spine.

They also found clinical weakness in raising my right foot, clonus in my right ankle.

So I am quite scared that this is the early onset period and that all of these random Radiculopathy being found in different sections of my spine will progress to wider nerve damage. I've never had back pain or back problems so it doesn't seem to make sense that my back is causing this.

I will post the full results hopefully later today when I have them.

I don't mean to post to argue. I'm just looking for something that irrefutably means "Not ALS" and I don't feel I've found that. Contrary - the symptoms I'm feeling make me more certain each week.

Weakness in hands 6+ months
Twitches mostly in legs and feet 2 months
Weakness (clinical) in foot 1 month

(also now crying in my right eye randomly, yawning attacks thru out the day randomly, starting to speak less clearly, and notice significant voice changes: monotone, deeper. Feels like the bulbar region is getting involved more now).