Worried, need some input

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mizuden

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Hey everyone, first of all, I'd like to thank you for this great forum. I've already found some very insightful information. My symptoms have me perplexed and I'd love to hear your thoughts.

About me:
Male, 32, caucasian living in Japan.

My symptoms started around last December. I was first having issues with my right hip and the right side of my neck. Pain and stiffness. I saw a chiropractor for this who advised me to exercise my core. In February I started getting pretty annoying right shoulder pain. General discomfort and very noticeable pain with certain movements (mostly overhead and while doing push-ups for example). I've since had a clean cervical MRI (mild spondylosis, but shouldn't be an issue) and a clean shoulder MRI. I've tried painkillers, a steroid injection and rest but saw no improvement. Also, when I lay in bed with my head on the pillow, my neck (bottom right) gets very uncomfortable.

2 weeks ago I started seeing a physical therapist for what they believed to be a shoulder impingement. So far, no noticeable changes, but it's only been a few weeks. I just came back from my appointment today and he noticed quite obvious right side shoulder muscle atrophy. Trapezius and deltoid are most noticeable. I actually believe that my "lack" of right side trapezius is causing the uncomfortable feeling when I lay on my pillow. I think there is not enough cushioning and a nerve is being compressed. He also pointed out that my strength in that arm was less than my left.

This actually goes along with my most recent symptom, arm weakness, at least that is what I think it is. Typing right now, my right forearm and shoulder feel tired and achy, the same happens when I hold my phone. However, I can still lift the same amount of weight with either arm.

Additionally, my right leg started feeling off. I've always had some issues with that leg but now, walking feels funny. For what it's worth, this might just be due to my lack of exercise/walking over the last few months because of corona... I went hiking a couple of months ago and was first having issues with my right leg but after a while of hiking, it felt fine.

I've also had a lot of twitches, mostly all over but more noticeable in my feet, at the top of my knees, and around my right elbow and shoulder. However, they can happen pretty much anywhere. I can also easily trigger cramps in my feet and calves. Although, this improves with eating right and enough.

The PT rescheduled me with the doctor I saw first because of the obvious muscle loss. I'm quite concerned, to say the least.

Does this sound like ALS? I know that this question is a hard one but I just can't think of a reason why my shoulder would be wasting away without injury and why I've seen no improvement over the course of 6 months. But, wouldn't I have noticed much more significant weakness in my arm by now with this amount of muscle loss and if it was actually due to ALS? I should note that my right side is/was my strong side, I am right-handed.

I attached a picture.

20200731_103243.jpg
 
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lgelb

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Issues can feed on themselves, so I'm confining my comments to the muscle wasting, since you say the PT called it out. I can't see anything particularly revealing in the photo.

It started with pain, and that sounds more like frozen shoulder, an injury, or a neuropathy, than MND. Impingement is still a possibility, in one form or another. The atrophy could be a byproduct of lack of use over the last several months; even if you were lifting, you might be shifting the weight to less affected muscles.

So I would be heading to an orthopedist, perhaps a shoulder specialist, presuming your doc doesn't see anything new when you return. S/he can determine whether further testing is warranted, or oversee a continued empiric trial of PT. I would also re-examine your mattress, pillow and any chairs/sofas you use, that might be past their prime.

Best,
Laurie
 

mizuden

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Thank you so much Laurie for your reply. I really appreciate it so much!

I think I have gone through 3 pillows and two mattresses by now and can finally sleep more comfortably but I agree with you, that is still possible. I have to sleep on my left side because on my back, my neck hurts and on my right side, my shoulder hurts.

I guess one question I would like to ask you is about weakness. I understand that perceived weakness is entirely different from clinical weakness. But, correct if I'm wrong, I have a hard time understanding how someone can go from normal to failure without noticing something else first. In my case, typing, holding my phone, washing my hair, drying my hair, my right arm and shoulder feel weak as soon as I start. Even just sitting still, my shoulder feels weak, like it takes effort to just be there. Wouldn't someone who eventually lost complete control of a muscle gone through a phase similar to that first? So sorry if I am asking too much but I'm just trying to understand.

Kind regards,

Nik
 

lgelb

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The hallmark of ALS and related diseases is, you become completely unable to do things that you would otherwise "feel" able to do. You wake up one morning and can't do X. There is no pain phase, particularly not one at rest as you describe. My husband went from walking two miles to two blocks literally overnight. He never felt pain in his legs, nor a feeling of weakness.

So you can see why no one here will read what you wrote and think of ALS.
 

mizuden

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Thank you for taking the time to reply again Laurie, very much appreciated!

I totally understand that. I'm just wondering because I've read several stories on here from diagnosed people who had atrophy but were still able to do the same task, just to a lesser extent. If my right shoulder (which was noted as atrophied by the PT) and my arm get tired super fast from typing for example, wouldn't that fit in the same boat? Like yes, I can still write an essay but it is just much more tiring. In fact, I've read one story on here from someone that had that exact same issue at first, arm getting tired from typing. (His name on here is 'Inventor').

Also, what I experience isn't really pain. Pain only happens when I do certain movements with my right arm. I'd describe the feeling as exhaustion in my arm and leg. Like, the way your arm feels after doing some heavy exercise. It just feels like that almost non-stop.
Right side atrophy, muscle exhaustion, and twitching (which is more prominent on my right side) are the reasons why I am concerned.

Again, thank you very much for taking the time to read my comments. It really helps to hear from someone. I live by myself in a different part of the world than my family and close friends. The last few days have just been rough.
A reply would as always be much appreciated!
 

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Laurie is describing ALS very clearly. What you are describing just isn't the same thing at all. I can completely agree with her - my husband, like all the PALS I have talked for years since, was totally mystified at how he felt completely normal but muscles simply would not work. The pain came way later once severe atrophy froze his joints, but he did not find his arms got super tired. They simply did not work.

Please don't try to make what you are experiencing fit into what you read PALS describe - you don't describe ALS at all, and that is a fantastic thing. Go back and work with your doctors and find the reason for what is happening, but that's really the end of what we can do to help. Please let us know the diagnosis once you have it as this helps others that are convinced they have ALS when they have symptoms like you that are not.
 

mizuden

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Thank you so much for your reply!

I'll give a brief update.
Went to see my doctor today. I should note that she is a rheumatologist but I was referred to her because of her good English. My Japanese is alright but when it comes to medical terms etc. English is just so much easier for me.

Anyways, she was the doctor who initially referred me to the PT. When I saw her today and told her about my weakness and atrophy she seemed as puzzled as made. The PT had made a note saying that my right deltoid is only 20% of the left one. Honestly, I can see and feel that it is smaller (she could see that too) but I don't think it is only a fifth the size of my left. He also noted that my right forearm is thinner. This confused us both because it totally isn't, if anything it is slightly thicker. Strange...
She said she didn't think it was autoimmune-related because my recent blood test showed no inflammation.
Either way, she referred me to the head of the hospital who is an orthopedic surgeon specializing in hands and arms. If I understood her correctly we will be doing some sort of nerve test, not sure it'll be an EMG but it sounded like it since I had brought it up and she agreed. I know he is not a neurologist which is, well, a little disappointing. Quick question here, would an orthopedic surgeon also be able to detect motor neuron issues in an EMG?
She also did some quick reflex tests on my arms and noted no significant difference. I did a grip strength test and both sides were about the same and totally within the normal range. I am not surprised about this however since my weakness is not grip-related and more about just lifting the arm, using it and carrying things, etc.
I feel a little more at ease but I'm still concerned about the shoulder atrophy, twitching, and getting tired super fast in my right arm. Like, I switched to using my phone with my left weeks ago because it is just too much effort to use it with my right...
The next appointment is in 2 weeks.
I'll keep updating.
 

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Let us know once you have a diagnosis from a neuromuscular specialist - you don't have ALS but these doctors will work on finding out what is going on and get it treated. That will be the important update for here. All the best.
 

mizuden

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Hi everyone.

I just wanted to check in real quick given that I had my follow up appointment with the head of the hospital today.
We did an EMG of the deltoid and biceps on both sides as well as a nerve conduction study in my hands. At least, that's what I think it was. Everything was in Japanese and I struggled a bit with the language. Basically, they placed electrodes on various muscles in my hand and sent electric shocks. They also took seven x-rays of my neck and I had a standard physical. No reflex tests. Right-side trapezius and deltoid atrophy was noted.

The doctor, who is an orthopedic surgeon, told me that both nerve tests were totally fine and diagnosed me with thoracic compression/outlet syndrome mainly due to my symptoms and the x-rays which showed that my cervical spine was in a not so normal shape and my shoulders appeared to be lower than normal.

I am not convinced with the diagnosis since I have plenty of symptoms that point away from TOS and I am also not presenting some typical symptoms of that disease. However, I am going to trust him as far as the nerve study is concerned. Am I correct in assuming that even though he is not a neuromuscular specialist, he would have seen abnormalities found in ALS had they been present in my nerve test? Like, just abnormal enough that he would have ordered further tests?

Unfortunately, the only report I received is of the EMG and it just shows some squiggly lines in different frequencies(?) of the four places tested. The ones from my right arm look slightly different than the ones from my left but I am not even going to try and interpret that. Don't wanna go down that rabbit hole. I could upload those but I don't think anyone will be able to really tell anything from them. What do you think?

For now, I am happy that my nerve tests came back normal and I am ready to rule out ALS at this point. Or, should I still consult a neuromuscular specialist? My next follow up with the same doctor is in a month.
 

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As to your questions, yes and yes. If all you have is squiggly lines, no, those aren't going to change what we think.

Did they suggest physical therapy? I would try to see someone who specializes in c-spine stuff. It's delicate.

Apart from following up what you do seem to have (and PT is good about suggesting new routes to follow if needed -- it's an empiric modality), I agree that there's no reason to go any further down the rabbit hole of ALS. You're in the clear -- congrats.

Best,
Laurie
 

mizuden

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As always, thank you so much Laurie for replying.

I'm very sorry but I am not familiar with the terminology which is why I said 'squiggly lines'.

Yes, they told me to continue with PT. I actually had my PT appointment right afterward but I guess the message hadn't gotten to my PT yet and I had a hard time explaining to him what the doctor told me. I will see how it goes and will consider going to a specialist if I see no improvement within a month.

I expect this to be my last post on this forum and I would like to express my sincere thanks to you and affected for taking the time and replying to my posts.

I wish you and anyone else stumbling across this post nothing but the best.

Sincerely,
Nik
 

lgelb

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Nothing wrong with saying "squiggly lines" -- that's what the waveforms are. Sounds like you have a plan -- cheers.
 
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