Shoulder pain and atrophy - symptoms continue

[Tiptop12]

Hi,
It's been a while since I've posted here. Again thanks so much for taking the time to read this. I know you have so much to contend with and even glancing at this is greatly appreciated .
Original post which automatically closed: Leg stiffness, difficulty walking and muscle fasciculations

I wanted to wait until I had some tests before posting.

Just a very quick recap : (17 months ago)
First symptoms started March 2021
Tightness, aches and pinching in legs (specifically quads) - Physiotherapy , no relief
June 2021 : Arms started to ache
August 2021 : Fasciculations and muscle spasms started in legs , spread to arms and shoulders, upper back , abdomen
and have continued to date.
October 2021: Pain and burning in upper arms and shoulders. First noticed atrophy in shoulders /upper arms (change in anatomy)- Bilateral dents in both shoulders (see photo from original post)


I've had a MRI of brain and full spine which showed nothing except minor disc bulge at C5/C6. Ck in bloods from October '21 was in a normal range.
Last month (June' 22) I had my first EMG. The neurologist who conducted observed fasciculations on the EMG - particularly calves and shoulders. She did say that she didn't see anything 'sinister'.
(maybe a BFS but results would have to be further analyzed as she said) . However she also said that if weakness presents then to return again .
Unfortunately I have not received official results (apologies for the lack of scientific data) as she said they would be sent to the original (referring) neurologist. The original neurologist and secretary have not been contactable for the last number of weeks. I'm a little in limbo at the moment.

That aside , my fasciculations and spasms have continued all over but I've sort of learned to live with them and try to ignore them as best as possible (11months). I have tried to take the positives from the EMG and even joined a gym (once a week) and go running.
My legs can be quite stiff but I can push through it. Both my shoulders and upper arms however continue to ache and in particular my right shoulder. During a run my right shoulder tightens up and I find it difficult to move.
It feels as if tissue, cartilage or muscle is missing. Also after a weeks work symptoms seem to be more aggravated.

I haven't experienced much weakness but more pain and discomfort around inner upper arm - anterior deltoid and down (which makes some movements sometimes awkward and hence I may appear weak).
Sometimes I feel perceived weakness down the right arm and reaction time to grip something is slower.

1. I still do think about a MND (including ALS) --Could this be atypical or slow progress ? Flail arm syndrome ?

2. Could this be more of an upper motor issue ( the fact that EMG hasn't shown anything major - however I would prefer proper results) . In my original clinical exam I had brisk reflexes in both legs.
I can see the differences in shoulders / upper arms between photos of now and two years ago. The skin is looser now , less bulk, skin flickers as I move my arm and the dent looks bigger - like a pit at front of shoulder. (where I experience the pain and discomfort) .
Also bone protrudes more (acromion process) especially in the right shoulder. The GP did think there was atrophy but the neurologists weren't too concerned. My wife also acknowledges the changes.
In the gym I have carried out some weight exercises that target these areas hoping that the muscle bulk will recover but no effect (sometimes I wonder if I'm causing further atrophy).
I have tried physical therapy and deep sports massages - these give a bit of relief in the short term but realistically not changing much. The EMG neurologist's general opinion was that if I haven't experienced any weakness /failure at this stage then I'm probably ok. She did acknowledge the unusual anatomy. Does any of this sound familiar to anyone ?

In general I'm pushing on with life , ignoring the fasciculations and general arm/ shoulder discomfort. I have 2 children so I don't have a choice. However every time I see my shoulders in the mirror (further thinning) or the shoulder pain becomes intense its difficult to put it to the back of the mind.
Overall I can function relatively well, energy levels are ok but my body has been in a general state of discomfort for 17 months or so. My symptoms feel slow but progressive.
Again thank you so much for reading and greatly appreciate your insights.

 

[KimT]

Did you ever consider visiting a rheumatologist? It might be something like fibromyalgia. If it were me, I'd go to my general practitioner and let him/her know what you've been experiencing.

If you're still running and have energy, I'm afraid we can't offer much help on this forum. I would take the matter up with your doctors and see where that leads.

 

[affected]

I'm sorry to hear you are still concerned after all this time.
It sounds like the EMG is clear, which is great news.

If you go back to that sticky post, you will see that what PALS tend to experience is feeling quite normal in themselves, and just having their bodies failing on them.
While they may experience various other symptoms, it is the failing of muscles that is the important bit, and that is what an EMG shows to be from dying motor neurones, if the reason for the failure is ALS.

Feeling stiff and having discomfort is not muscle failure.
That doesn't mean nothing is wrong at all. I do think it is time to ask your doctor what is next as it would seem it is probably not neurological. I hope you get answers soon.

 

[Tiptop12]

Thanks Kim and Affected for the swift replies. Really appreciate it. Yes Kim I did mention it to my GP a few months ago about seeing a Rheumatologist but he didn't agree. Because I had a normal C reactive Protein value he thought that it was probably more a neurological issue. But I guess I should still pursue this avenue. I had read of one or two people who were in the early stages of Mnd/als exercising and weight lifting but I assume that's probably a pretty rare thing. I agree Affected, it's the thought of no failure /major weakness so far that keeps me going. But it's difficult to watch my shoulder become thinner over a few months. I am however trying to keep an open mind as to what else could be happening.

 

[lgelb]

There are flail arm syndromes beyond ALS but they would show up on EMG. Also, you mention leg issues that are not seen with flail arm onset. My husband had the flail arm variant and by the time there was atrophy, the damage was quite clear on EMG, not only in the arms but in all muscles tested.

So, I think it is correct that you will need to look elsewhere. I would go back to your GP and ask to be worked up, and a rheumie referral could do no harm.

 

[Tiptop12]

I'm really sorry about your husband Laurie. Thank you for the insight into flail arm syndrome. The only reason I have concern is because of bilateral shoulder pain and atrophy (for no apparent reason) seem to be a regular feature in this condition. And of course widespread muscle twitching and spasms. Anyway I'll keep asking questions (incl rheumo) , keep trucking on and report back if I ever find any reason for my symptoms as it may help somebody else.

 

[lgelb]

Inability to move the arms (not difficulty in certain movements or feeling weak) is the key, not atrophy, pain, or burning. I really don't think you have to worry about ALS, which is a wonderful thing.