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Theycallmebyers

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Hello,

Age: 33
Male

I found this forum as many others have, researching symptoms that lead to possibility of ALS. I appreciate all help with my concerns, my anxiety has been through the roof for the past week. A place I've never been.

My concerns:
In Feb/March 2018 I started noticing two things, my shoulders would "tire" and the muscles would feel like I just worked them out during small activities like holding up my phone or cleaning a pan or picking up a small child. And my neck/throat would get sore when chewing tough to chew food. (bread, steak, etc..)
That quickly was accompanied by the same feeling in my bicep/forearms/wrists and hands. A burning in my tricep area (as I type this my right wrist is burning).

I am seeing a neurologist who found some legions on my brain, he called mild but abnormal for my age. And we are going to do a cervical spine MRI to rule out MS. However, he suggest my issue is coming form my shoulder and just suggested I go do some PT for my shoulder, yet he wasn't specific as to what he thinks is wrong with it.

I have been very stressed and anxious lately, and have had some muscle spasms and odd feeling in my chin/throat area. Last night laying in bed to sleep my arm would spasm, my leg, my neck would feel like it's shaking. Random, not all at once but all happened in short time frame. I am telling myself it's from the stress/anxiety.

What I'd like to clear up, in hopes to help relieve my anxiety is... I have read what leads me to believe that ALS does not come on with "pain", rather it starts with the "loss of use" or clinical weakness.

What I am wondering is, does the "clinical" weakness start with feeling physical weakness/fatigue? Pain/Muscle burn when using arms, for example. Do you feel your muscle pain before you can't use it any longer?

Also, do you feel joint pain associated with ALS?
In multiple joints all at once? Wrists/Ankle(s)?

Also, It does seem like my symptoms come and go. Before a recent cross country road trip a month ago, I was dealing with a lot of pain in my arms. (was doing a heavy data project at the time). Had another bout waking up with what I call "dead arm feeling" even though I could move my arm. 3 days into the road trip I woke up feeling fine and only had the mild shoulder/bicep fatigue that started in the beginning when doing small tasks, holding my phone, etc...

Any help clarifying the "muscle pain" before "clinical weakness" would be greatly appreciated!

Also, I am in a position to donate some $ and would like to do so. Any help I can be to this horrible disease, I'd like to do. Any suggestions for best places to donate?

Thanks,
Chris Byers
 

KarenNWendyn

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Re: Muscle Fatigue before failure

Muscle failure comes before any sensations of burning. However, any muscle can feel fatigued if it is overused relative to what it is capable of. This would be the case in a physically normal individual as well as in someone with ALS.

But in ALS, you find you can’t perform certain tasks you once could, such as turning a key, fastening a button, walking on your toes or heels. There’s no pain associated with the inability—- you just can’t do it.

Joints do not hurt in ALS unless the disease has advanced to the point where muscles no longer support the joints. By that point, people have had a confirmed diagnosis of ALS usually for a while.

This is in contrast to arthritis, tendinitis, ligament or tendon strain, and injuries where the joints and surrounding tissues do hurt and the muscles burn and ache because of the joint/ tendon/ ligament problem.
 

lgelb

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Re: Muscle Fatigue before failure

Hi Chris,

Between the doc and your PT eval, there should be some sort of clinical diagnosis for your shoulder, at least for reimbursement purposes. It does seem like a more localized phenomenon than systemic. As Karen says, it's not an ALS pattern and could well relate to some kind of overuse syndrome. If you have been sleeping on the same mattress or pillow for a while, it might be time to re-evaluate those as well.

I would think your neuro would order an EMG if the PT does not help. A massage by an MT with a neuromuscular specialty might help as well.

Best,
Laurie

PS -- to answer your question, donations to your local ALSA or MDA chapter are most likely to help local PALS, or some people donate to these Forums to help us continue to serve a worldwide audience
 

Theycallmebyers

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Re: Muscle Fatigue before failure

Thanks for the quick reply Karen.

So, if my arms/wrists seem to burn/ache when holding a pan, this would not be indicative of early signs of ALS? Or in ALS could this slowly progress into just not being able to hold the pan? I think my confusion is that i've read people say that with ALS, it just stops working leading me to believe there was not many signs up to the time it just stopped working. Like, you literally were fine one day holding the pan and then the next you just couldn't hold the pan, no oddities in holding the pan previously. Sometimes doing things with my left had feels odd, but I think I also am over-thinking things and usually it's associated with tightness in my forearm/wrist area. Like typing, feels a little odd with the left hand but felt more odd this AM than it does right now. And my forearm/wrist hurt so I assume whatever is going on is effecting how my hand moves.

He suggested I see an RA, but my blood work has come back good for the typical indicators of RA multiple times.

I do plan on asking my Neuro to do an EMG as I have read on here is a real indicator. He told me at the first appt. he did not "think" ALS, but performed only arm resistance tests (resist this, don't let me pull your fingers apart, etc...) He's very brief and I'm learning I have to pull information from him.

Thanks,
Chris
 

KarenNWendyn

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Chris, I see no evidence that you have ALS.

If your arms and wrists ache while holding a pan, you most likely have some tendinitis in your wrists, though you could also have arthritis.

In ALS things do just stop working, often without warning. That’s not to say there may not be subtle signs due to smaller muscles failing, but generally it’s one day you can no longer do something you could do the day before.

It might be a good idea to see a rheumatologist especially if the neurologist clears you from his standpoint. There are over 100 different types of arthritis, many of which have normal blood test results. Even rheumatoid arthritis has a negative rheumatoid factor about 25% of the time. A rheumatologist can also sort out soft tissue problems such as tendinitis and repetitive strain.
 

Theycallmebyers

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I guess it's more than "ACHE" they can get shaky and it becomes harder to hold said pan. Or after physical use that I could do before with no issues, trimming the bushes for example, they seem to become weak and I cannot hold a bottle of water without arm shaking really bad. However, that does reside.

Thank again. Hopefully this will ease my mind while I let the Dr's do their thing. I will take your advise (and my Neuros) and go see a Rheumatologist to see what they say as well!

I have made a donation to the site, you guys seem to be helping a lot of people. Thanks for that! I will also look for a local organization to donate!
 
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