Nerve entrapment VS. ALS

[LeprechaunSean]

Ok so this is my first time on here. I am a 35 year old white male. I've been very healthy my whole life. Here's my situation.

1.5 - 2 years ago noticed my right arm/side consistently weaker when working out at the gym, and my grip as well. Didn't think much about it. Was working out five days a week at the time, often twice a day.

1-1.5 years ag noticed twitching(fasiculations) in my shoulder and arm. Still wasn't too concerned.

1 year ago regularly started getting cramps at the gym in my right arm only. stopped working out.

8 months ago finally went to the doctor about my right arm twitching/weakness/cramps. He referred me to a neurologist.

7 months ago got into neuroligist, got my first EMG, Nerve conduction test, bloodwork and MRI. They diagnosed me with carpal tunnel syndrome & sent me to physio.

6 months ago started physio, physio therapist noticed I had atrophy in my right hand. I hadn't even noticed yet, and was a little shocked once I really started looking and she was right. At this point I started getting worried.

5 months ago had follow up with neurologist, told her physio was doing nothing. She referred me to orthopedic surgeon for carpal tunnel release surgery.

4 months ago met with Ortho surgeon, he took one look at my hand and said "that's not carpal tunnel" and referred me to hand/upper extremity specialist as he was only a general surgeon.

3 months ago met with hand specialist. He said I have severe Ulnar nerve damage, and sent me for another EMG/nerve conduction. The technician that did the EMG said that she also saw slight abnormal readings in my left arm. She visually saw my fasiculations and was the first to mention ALS, but felt that it was not likely since she picked nothing up in my legs, back or neck.

**Went home researched ALS, felt like puking.***

2 months ago met for follow up with hand specialist. He said "at this point we cannot rule out motor neuron disease" and referred me to a highly recommended neurologist who specialized in ALS.

1 month ago met with ALS specialist/neurologist. He did my 3rd EMG and said "the bad news is that something is going on with your arms" and ordered some more blood work & a spinal tap which I just had done today.

Here's where I am going with this however, I have an old shoulder injury, my right shoulder, that never healed right. When all this started I was working out heavy at the gym and my should would constantly click and pop, really not natural, like something was wrong. I have mentioned this regularly throughout my visits and the physicians always just kind of shrug it off. I now can see that I have atrophy going all the way up my arm. I also regularly see shoulder injuries listed as possibilities when I input my symptoms.

So the question is, does anybody out there know of cases of shoulder injuries that cause ALS symptoms? Thanks for any input

 

[notme]

The thing to remember here is that if the NCV is NOT normal, then there is always a good chance something else is the problem.

I would suggest trying not to over-stress about ALS at this point until all other options were ruled out. With severe ul ar neuropathy, you can get atrophy, believe me.

Did the hand doctor want to repair the ulnar nerve damage?

With your legs being ok and with no clinical issues in your legs at this point, I would try to remain positive.

A nerve can be trapped anywhere, the wrist, elbow or the shoulder. Even something from the neck.

I have severe atrophy in my left arm and hand, too. It doesn't mean ALS u til all other causes are treated or ruled out. With nerve damage in the ulnar nerve severe enough to cause atrophy, there would be EMG changes as well, I'd think.

What did they suggest as the next step? A technician should have never me tinned ALS to you at all. Yes, it is possible, but certainly not certain at this point.

Take care and do let us know what the u.timate decision is.

 

[notme]

Sent reply. It's awaiting moderation. Give it a bit to show up, but the gist is this:

There are still other possibilities with your abnormal NCV.

 

[LeprechaunSean]

Thanks for the replies. The hand surgeon had me sign a document for exploratory surgery, but he wanted an all clear from the neurologist before he did that.

 

[LeprechaunSean]

I'm also wondering about time line. Its been roughly two years since I first noticed weakness, over a year since the twitching started, so far I can still use my arm & hand fairly well, even with pretty severe atrophy in my hand. My index finger won't straighten all the way anymore, but almost. Is this significantly more time than usual for als? or maybe just slow onset?.............I don't know. I also wonder about my age, I just turned 35

 

[notme]

ALS can progress slowly, yes. But, until and unless some sign should show up somewhere other than your arms, they aren't going to diagnose you with ALS. it takes signs in 3 body regions.

Sounds as if at this point only your arms are affected by whatever you have if your leg EMG and neuro exams are okay.

 

[LeprechaunSean]

have you been diagnosed yet?

 

[Rami]

What sort of abnormalities were on the emg? Are we talking fasiculation, postive sharp waves, Fibrillations?

 

[LeprechaunSean]

Yes I have fasiculations, as for the positive sharp waves & fibrillations I'm not sure, but I'll go look at the report.

 

[LeprechaunSean]

Ok so yeah my report shows all three in my right arm, fasiculations, positive sharp waves and fibrillations. It also shows just a little bit of fasiculations in my left aram.

 

[notme]

Wright is the resident expert here on EMG reports.

There are other things that cause issues in the arms only. I'm assuming the EMG of your legs was okay?

 

[LeprechaunSean]

Yeah the legs looked good, so far. I have noticed the odd fasic there, but I've been super stressed out the last month or so and haven't worried about them(too much). One thing that seems out of place for ALS is that my hands have been going numb at night while I'm sleeping regularly. My understanding is that ALS does not cause this......

 

[momap53]

Sensory issues aren't a complaint with ALS.

 

[LeprechaunSean]

Can't sleep. Bad night.......feels like twitching is spreading

 

[notme]

Twitching is normally after profound weakness sets in with ALS and when the muscle is dying. Is it possible the increase is due to anxiety?

What did the report say?