Update and shoulder weakness

[mrpet]

Hi there,

A brief update on my background:

- Started fasciculating in late November 2015 (14.5 months ago)
- Still (!) highly anxious about ALS
- Had left foot weakness diagnosed by neuro (using EMG and NCS) in mid-October 2016 as Peroneal Nerve Neuropathy - did 3 months of exercises and now the weakness has resolved (confirmed by clinical assessment by neurologist - foot seems fine now)
- In early Jan 2017 I started having the sensation of a "heavy" shoulder
- Did strength testing using weights without warmup in mid Jan, which caused a couple of days of mild pain in left shoulder
- Did more strength testing using weights in late-ish Jan (ie about a week later - c.22nd Jan) again without warmup, left shoulder was extremely sore for 4-5 days with restricted range of motion
- Left shoulder was noticeably weaker when I did the strength testing, especially the second time even more so (e.g. could hold 30lb dumbell out in front of me for 3-5 seconds in right arm but barely 1 second in left arm)
- Saw neuro again in beginning (1st) of Feb. He reported that he did not detect "significant" weakness (although to me you could see in the strength tests there was a mild difference between left and right shoulder tests).
- He did EMG same day on left shoulder and arm, starting with deltoid and working down (he didn't test infra/supraspinatus as far as I could tell) - EMG was normal with no spontaneous activity or other abnormalities. He stated there was "no concern" for ALS. I asked him if he was comfortable not testing the trapezius, and he said he didn't need to.
- Saw Orthopedic surgeon one week later re shoulder and he got me to push and pull my arms in all sorts of ways. He diagnosed me with very mild (he said 5%) weakness in my left infraspinatus and supraspinatus based on his clinical tests. I asked the ortho if I should have had an EMG on trapezius, he said that definitely was not required (he did not diagnose weakness in my trapezius or deltoid).
- He did an ultrasound on rotator cuff which showed no tears but slight bursitis (inflammation). His diagnosed me with strain of rotator cuff and gave me 6 weeks of rotator cuff exercises to do.
- I have or I am noticing more twitches around my left shoulder blade now than before - I don't know if I'm just more hyperfocused on it now or not.

My question is:
- Would the EMG of the my left deltoid and muscles lower (including biceps) have shown abnormality (eg fibs/psw) if the weakness was in the infraspinatus and supraspinatus

- I note three things:
1. that the infra/supraspinatus are innervated by C5-6, just like the deltoid and biceps (among others), so any nerve root lesion in C5-6 would expected to have been seen in other muscles innervated by these nerve roots
2. I also note that I have been fasciculating for a year, so if there was a pathological process in place I would expect it to be widespread by now
3. There was about a month from my first perceived "heavyness" in my left shoulder to the EMG - I expect enough time for wallerian degeneration (if any) to have spread from the infra/supraspinatus muscles to the deltoid

Many thanks!

 

[Atsugi]

For perspective, and to partly answer your concerns, I note three things:

1. You gave 12 bullet points, none of which were anything like ALS. Most pointed AWAY from ALS.
2. Your doctors cleared you.
3. You asked technical questions that require some detailed explanation. Importantly, the answers need context. So I suggest asking the same doctor who performed the EMG.

 

[mrpet]

Thanks Mike. What context is needed for the answer to my question? I was looking for reassurance I guess as my understanding is that muscles of the same myotome (i.e. Innervated by the same nerve root) would typically exhibit abnormalities if there was ALS (anterior horn cell loss) present in that nerve root - when would that not be the case..? Thanks again.

 

[Nuts]

Mrpet, we are not doctors. Please, you are asking very detailed questions, as Mike explained, and the person to ask them of is the doctor who did your EMG. We know a LOT about dealing with the disease, but we are not neurologists.

Please go back to your doc.
Becky

 

[mrpet]

Ok thanks Becky. I actually did email my doctor after mike suggested and he kindly replied this morning amazingly. His reply was:

"If the question is als or motor neuron disease then yes, if c5-6 were affected then you would have abnormalities in deltoid and biceps. That's why I'm not worried."

I thought this question and response might be interesting for others who are curious about their emg results or why a neurologist picks certain muscles and not others when they test you with the neeedle examination. Anyway, thanks again.

 

[mrpet]

Just a short update. I saw a physical therapist today who gave my left infraspinatus a 4/5 strength rating. This made me very worried as my shoulder is feeling weaker than ever. I asked my neuro if the EMG might have been too early as I have read that it takes a few weeks for fibs to show up in an affected muscle let alone an adjacent muscle (the EMG tested the left deltoid/biceps and other left arm/hand muscles, but not the infraspinatus itself - but all those muscles mentioned are in the same myotome, or innervated by the same root nerve).

My doctor rather glibly replied that while I was correct about the timing delay of fibs, "als does not happen overnight".

Not sure what I should be thinking now re whether the EMG was done too early to spot active denervation...

 

[lgelb]

15 months from symptom onset, your EMG was not done too early.

 

[mrpet]

I guess if you consider the start of fascs as symptom onset then I see your point. But I took the noticing of weakness as symptom onset, which was only a month before the EMG. I guess if I do have ALS then the fascs would be symptom onset, but fascs don't "cause" weakness per se (while denervation does)..?

Also, just so I hope you don't think I'm seeking to waste your valuable time, I have donated a very meaningful sum to als research at oregons biggest hospital, which has a dedicated als research fund. I don't expect special treatment, I just want you to know I'm trying to give as well as take.

 

[lgelb]

Fascics don't "cause weakness," but in the company of other neurogenic changes and clinical weakness, can (when seen as fasciculation potentials on an EMG) suggest motor neuron disease. So yes, they count in the 15 months. Acute and chronic denervation on EMG are part of the criteria for diagnosing ALS. We haven't heard evidence of either in your case -- a very good thing.

 

[mrpet]

Well my shoulder weakness progressed and I got another emg done today at OHSU. The emg was very abnormal, lots of fibs-psw and neurogenic changes. They are now thinking als unless my MRI (today I hope) shows otherwise. This comes after 15 months since fascs onset and many emgs. Assuming I am diagnosed with als I will post in the newly diagnosed forum with my full history. Very sad.

 

[Nikki J]

Sorry to hear this. How widespread were the findings? Which muscles? Are they looking at Parsonage Turner? I can remember at least 2 members who ended up with that diagnosis

 

[mrpet]

They only tested left hand side (they will do right hand side on Tuesday next week). The accute denervation was in deltoid (1 fib), infraspinatus (many fibs), supraspinatus (many fibs and mup abnormalities) and trapezius (fibs, not sure how many). The triceps, biceps, forearm and hand were all clean on that side, as was my left leg (except some old reinnervation from my previously diagnosed peroneal neuropathy- but no fibs etc). They didn't mention parsonage turner as yet.

They will do the MRI on my neck around c4-c5, and also on my brachial plexus nerves.

 

[mrpet]

Well I promised to revert back. I've had my MRI and it got read by the radiologist straight away. My neuro then called me immediately.

They have found "severe" stenosis in my spine, worst at c5-c6 but also in other areas. My neuro said this completely fits with the history, clinical exam and EMG picture. I am seeing my neuro and a neurosurgeon to discuss treatment for the severe stenosis next week. I'm assuming that the chances of having severe stenosis and then als on top of that are immeasurably small, so I am taking this as (relatively) great news. Thanks for bearing with me.

 

[Nikki J]

I am very happy for you. No one wants neurosurgery except when you know the alternative is so much worse.

Thank you for reporting back and good luck/ speedy recovery

 

[ShiftKicker]

It's strange to be in the position to congratulate you on having major spine problems, but that's very promising news for you. I wish you successful treatment and physical therapy to hopefully help recover lost function, now that you know what's causing symptoms.

Be well

F