I need to ask this

[Zeomark]

I will be as concise as possible. I am a 45 year old male. I’m losing my mind with fear.

On January 5th I woke up and the first thing I felt is the twitch of a finger. Since then my left hand only has experienced 15-20 fasciculations per minute, without stopping. I’ve had trouble sleeping since then so have been observing my hand in the early morning hours and noted the twitch frequency goes down to 1-5 twitches per minute. As I wake up and start the day the twitches go back up to the typical rate.

The twitches are everything from quick pulses on the thumb to sideways movements on my index finger to curling my pinking. Basically every finger gets involved although thumb and index do the lion’s share of the twitching. My left hand also has a strong action tremor, which also mostly goes away at night. Not sleeping much, my brain has turned to goo, and I’m constantly switching around the names of my kids and wife and forgetting things.

I am a type 1 diabetic with decent control of blood sugars, but during a routine blood test in November I got an elevated Ck of 800, with 540 and 600 since then.

I have not noticed any weakness per se, but since Sunday (2 weeks in), when I had a very light exercise session I’ve felt my muscles are burning pretty much continuously. Now even a short climb up the stairs is going to cause calf pain, or opening a door will cause bicep pain.

I know the fact that I can now light any muscle in my body on fire at will speaks against ALS, the focal muscle twitching is still there driving me crazy.

One more thing is that I experience numbness of my left hand, forearm and left side of my bicep on waking up, not every morning but more than 50%. I might be sleeping on it not sure.

I am going to get an EMG/NCS done in two days at a neuromuscular clinic so I hope to find out what the hell is happening to me.

 

[lgelb]

You're on the right track. Let us know the results. I'd ask your neuro or PCP about a sleep study, too.

The elevated CK with the muscle burning and "at will" symptoms speaks to problems with muscles, not the nerves that control them, and a possible medication- or diabetes-related condition.

 

[Zeomark]

Just got out of neuromuscular clinic. NCS normal. Damn it was painful. As for the EMG They find some abnormalities, including fibrillations in my left hand, but nowhere else on my left side which they did a full check of. The doctor was talking about what he was seeing as he performed the test in real time. His assistant did not notice any abnormal reflexes and my twitching hand is actually has higher grip strength than the other one.

Looking at my hospital records he says my CK has always been elevated. He also said something to the effect that what he saw on the EMG looked like long standing damage. Not sure how he would be able to determine that.

He could give no explanation for why I am experiencing muscle pain all over my body.

Given all of the above his number 1 suspicion is a spinal issue effecting my hand only and has ordered an MRI in addition to blood work.

I don’t know if he’s just trying to calm me down.

 

[Nikki J]

EMG patterns can indicate acute and/ or chronic denervation. Long standing damage sounds like it was chronic which is commonly seen in this subforum and does not indicate ALS. ALS has acute and chronic denervation in a widespread pattern. Even then it can be other things

 

[lgelb]

He called as he saw it. There's no benefit to chilling you out prematurely. As Nikki said, an EMG shows acute vs. chronic damage. If you get a report with tables, feel free to post it without your details.

 

[Zeomark]

I will be getting the full NCS/EMG report some time this week. I forgot to mention I also paid out of pocket for a neurofilament light chain test last week. Results should be coming in very soon. I will post both of them once they are in.

Right now, three weeks and one day in my twitching is slightly more intense, and I am having pain in my biceps, forearms and to a lesser extent calves. I'm not sure if this pain is caused by cramping, spasm, soreness or what. My anxiety continues to increase to the point that it's actually conceivable the pain and increased twitching is actually caused by it. Then again increased inability to regulate emotion is sometimes seen with ALS.

I really can't leave my wife and kids behind. They need me right now. If we knew we could start making decisions to try and protect the kids as much as possible.

 

[Nikki J]

Emotional lability in ALS is not at all out of control anxiety. It is inappropriate and excessive laughing and crying. If you told me my pet died and I laughed like a hyena that is an example. And out of control loud sobbing is also seen.

 

[Zeomark]

 

[lgelb]

The only indication of acute denervation is in the very-commonly-irritated ulnar nerve. We would expect to see acute denervation elsewhere in ALS. Look to reduce repetitive motions and ask about appropriate hand/wrist exercises.

 

[Zeomark]

I got my NfL blood test result back and I am right in the middle of the normal range. I believe this makes it unlikely I am suffering from a neurodegenerative condition. Thank you.

 

[Zeomark]

I am back down the rabbit hole. My symptoms haven’t really worsened or improved, but they are still there and gnawing at me.

Reviewing my EMG/NCS I noticed that my cmap amplitudes are not good.

12.6 mV for ADM and 9.7 for APB, making for a 0.77 APB/ADM ratio, which is quite close to the < 0.6 cutoff used to aid ALS diagnosis and is indicative of UMN involvement and split hand.

Does anyone have a sense of what the normal range is for this?

 

[ShiftKicker]

I'm not sure hanging out on a forum for those diagnosed with ALS to get repeated reassurance is a healthy thing for you. Your best bet is to ask your doctor what it means. You've already been given advice and been provided feedback about your emg from lgelb. Your EMG/NCS report will also have included an summary/impressions- this is what you must refer to for interpretation.

From lgelb above:

The only indication of acute denervation is in the very-commonly-irritated ulnar nerve. We would expect to see acute denervation elsewhere in ALS. Look to reduce repetitive motions and ask about appropriate hand/wrist exercises.

 

[Zeomark]

Update 51 days after first symptoms:

The twitching of the fingers of my left hand has remained relatively steady in terms of intensity and muscles involved.

A week ago I started experiencing widespread fast twitches pretty much everywhere, but with a focus on the muscles on the inner side and sole of my left foot, with the same thing happening on my right foot, but with less intensity. The sensation is very much like a buzzing or crackling (florid?) . Similar but even less intense sensations are there on both my calves inside and outside. Sporadic pops just about everywhere else.

The widespread muscle pain and unexplained soreness is not as intense now, but looking at myself in the mirror it appears that my muscles appear to be wasting away everywhere. Forearms legs shoulders feet hands etc. My grip strength is holding up (measuring it) but I don’t feel as strong in pretty much every other muscle.

The thing I’ve been hanging my hopes on, a negative nfl test, now turns out to be compromised. I was taking 1 mg of biotin daily and this may have interfered and provided a false low. (Do not take Biotin for 72 ours before the Roche/Labcorp nfl test!!) I’ve retaken the test should be getting the results back next week.

I guess I just wanted to put this update out there for posterity and anyone looking through the forum in the future.

Thank you.

 

[lgelb]

It's sad that you feel you need to "hang your hopes" on the NfL, which is by no means diagnostic nor a rule-out for ALS. I encourage you to seek counseling if your fears of ALS are overwhelming your normal good sense.

Your EMG and, I am presuming, your clinical exam(s) have argued against ALS. If your muscles were "wasting away everywhere," any physician or other clinician is in a position to document that.

Again, I would ask about a sleep study and maybe more labs for systemic conditions, including post-viral syndromes, but the good news is that you evidently don't belong here.