Pain and fasics, 3 years duration.

[DGret]

It has now been 3+ years since fascics began and I started follow-up/surveillance with an ALS/NM neurologist. As I posted before, (here and here) 3+ brisk reflexes, negative Babinski, no clonus, no atrophy identified. Neuro has repeatedly said he has no concern about NM. However, I have upper arm and shoulder pains. I do not have stick figure arms. I can bicep curl 40 lbs and one handed lift same over my head.

No swallowing issues, grasp is ok, no tripping or falling. Because of the pain, shoulder and upper arm, I’m worried about flail arm.

My questions:
1. Is pain a feature of flail arm in outset?
2. Is flail arm bilaterally synchronous over time?
3. After 3 years onset would flail arm be obvious in atrophy as well as weakness?
4. Would a neuromuscular neurologist be likely to miss weakness after 3 years of flail onset?
5. Would the shoulders be clearly atrophic over 3 years?
6. (and last). Would the shoulders be painful in flail arm in evolution?

I have gotten the sense that the neuro (who says he’s diagnosed 1000 ALS patients) is confident no ALS and believes the pain is neuropathic, and still has not recommended an EMG. I have documented spinal stenosis but he says without weakness no surgery is indicated, I have severe DDD, as well as extensive spondylosis which I presume can be a pain generator as well.

Thank you so much for your help, and I’ll not post again.

 

[Nikki J]

Laurie has lived experience in flail arm but I am pretty sure she would answer all in the negative except there is often pain late in the game when muscles are so weak that the joints are not supported. That is not you. I am sorry you have spent so many years worrying about this

 

[lgelb]

Flail arm presents painlessly and bilaterally at onset, not down the line. My husband had "stick figure" arms, aka severe atrophy, early on, including the shoulders. Within a couple of months, he wasn't able to lift cans onto the checkout counter or put on a sweater, let alone do 40 bicep curls.

As Nikki says, pain develops with undue joint pressure and subluxation. Your neuro would certainly have noted subluxation or clinical weakness.

The most important "no" is (4). I have no idea why you are worrying about ALS, but if it's going to take an EMG to reassure you, find someone to order one.

Yes, DDD and spondy both cause pain. If it is progressing or not improving with PT, I would seek a second opinion from an orthopod with a spine specialty. If you're not doing PT, I would get that ordered, too.

Pain and fascics + brisk reflexes sound nothing like ALS. Only the first one really means anything, and usually that is that PT is worth trying. If you have tried it in the past, there are many PTs in the sea and some are better.

 

[DGret]

I can’t see how it could be anything else except flail in that everything symptomatic is proximal, and only in the arms; that is, if it were motor neuron based, which doesn’t appear to be the case without what I understand would be dramatic weakness and atrophy, after such a long time.

Thanks for all your help; I can’t describe how much this input means to me. At the end of the day it might be impingement or maybe frozen shoulder; I am asking my PCP/internist to order an MRI.

Bless you all.

 

[lgelb]

The flail arm variant is, like other ALS variants, a motor neuron disease.

You don't necessarily need an MRI to dx frozen shoulder but an orthopod can dx it. PT is often recommended.

 

[Nikki J]

You say you are a physician. Pretend you are your own patient. You know perfectly well you do not have MND symptoms ( even without your doctor and us saying it) you have let anxiety cloud your judgement. Please get help. It is sad that you are spending ‘ golden years” worrying like this.

 

[DGret]

Thanks Laurie and Nikki:
I would have thought with 3 years of fasics if it was flail arm, it would have manifest well before now and not with pain. I did a video visit with my neuro and he said not flail arm and not MND- he says no pain with MND at start. Are thee other versions of MND/ALS that could look like this? I did single hand lift 35 lbs over my head so I’m not flaccid/weak.

I’m trying to arrange an ortho/shoulder eval and maybe imaging if possible.

I won’t bother y’all again unless it is to inform you of an adverse outcome (ALS)

David

 

[Nikki J]

I hope you can finally accept your neurologist’s repeated reassurance

Best of luck to you

 

[DGret]

I’m seeing him in person tomorrow. He hasn’t examined me in months and we agreed to an exam before we close this out.

I’ve scheduled MRI scans of both shoulders, followed by a consult with a shoulder specialist.

FWIW - the neuro said it’s not MND - he says MND isn’t painful (and I KNOW my shoulders are not subluxated.

Thank you so much, and best wishes.

 

[DGret]

Saw the NM neuro this am - full exam negative for atrophy, weakness, or pathologic reflexes; conclusion- no ALS. MRI next week, shoulder consultation to follow.

Thanks.