Update - symptoms since Oct 2016

[concernedman]

Hi everyone, me again.

My first thread was closed in the beginning of this year and I have really tried to let this go since many of you reassured me it didnt sound like ALS.

As you know I had a quite big investigation done in 2017 with a bunch of bloodwork, MRI of brain and back, and one EMG in october 2017.

Nothing was ever found except for some disc bulgs
on the MRI. EMG normal with fasculations.

During this time I have all the time complaining about my right side of my body as I have really much pain in around my shoulder blade/neck and my right arm, right side of my back and my right leg has all the time felt weaker then my left side.

I was seeing a new PT the other day and the first thing she said when I took my shirt of was:” you are smaller on your right side, shoulder, chest and arm. Have you always been smaller on your right side?” - and thats the reason I ended up here again.

I realize that with symptoms over 19 months and 16 month since the twithing started - IF it was ALS, I should be more ”sick” than extreme fatique in right side of body and twithing (as been on the same place since the beginning; calves, knees, around elbows, shoulders and back?), right?

But my question is - what my PT described, is that atrophy in but said with other words? This is the first time someone actually confirms my own thoughts.

I hope I dont interupt or offend anyone with this
post but if I do, let me know.

Wish you all a good day

Br
Peter

 

[lgelb]

If you started off equal on both sides and lost appreciable bulk only on the right, that could be construed as atrophy, yes. But has this change actually occurred since the EMG, etc., or did it predate it? If so, I'd ask the neuro for a followup to make sure the disks are relatively stable, and to see where the musculature stands compared to what s/he saw last year. Without weakness (a good thing not to have), we still don't have any reason to suspect MND.

Best,
Laurie

 

[concernedman]

Hi Laurie,

I have no idea if it occurred before or after the EMG was done, but I have become aware of it after the EMG.

I do not longer know what weakness in terms of ALS means since you always says its about muscles not working, and not "feeling" week. Of course I get fatiqued in my right arm and leg even when doing basic things as carrying a bag of food from the grocery store, I always have to change hand for example.

And when it comes to atrophy I have read in so many posts in this forum that atrophy comes after a muscle dies, when you cannot longer use it. And thats not my case, I can still move everytning, standing on heels etc. But there is something really wrong with right side of back, shoulder och arm since it gets really fatiqued.

And when it comes to EMGs I have read so many times that if it really was something its should have picked it up, even if you only do 1 EMG and that you cannot do it to early?

So, if referring to all this posts about EMGs, atrophy and so on - I should be safe, right? I guess that even though the problems with my arm/shoulder together with the twitching - if it really was ALS - shouldn't I have become more "sick" than I am, after 19 month with "symptoms"?

Thanks for your time,
Best regards,
Peter

 

[Vincent]

A clean EMG is your get out of jail free card. While there are slow progressors, of which I am one, I have never had a clean EMG. You don't need to hang out here with a bunch of people who are for the most part old and dying.
Vincent

 

[lgelb]

Peter,

Atrophy may precede or follow weakness (for most here, it follows it), but the key word here is "weakness." Having to switch hands for groceries is not quite what we mean by that -- in ALS, the inability to carry groceries for any time at all with the right arm, would be expected to track with any clinically-evident atrophy.

As others have said, we are all asymmetrical, so being smaller on the side with issues is no more than we would expect, but you could try focused strength training/toning to see if you can move the needle. The PT was asking a question to understand your current baseline, not to imply that you have a disease.

 

[concernedman]

Hi all,

Thanks to all of you taking time and answering me, it really means a lot!

I have one question regarding twitching;

Ive been having ”isolated” twitches on several parts of my body since January 2017. Shoulders, elbows, thighs, knees and calves.

This could be called widespread of course since thet are all over my body but - the are always in the same muscle (as far at it feels anyway). When Reading about twitches it sats that widespread often is benign, but i have them in the same muscles throughout my whole body. Is this worrisome?

I Will have my second EMG Done wednesday next week.
Thanks and I wish you all a very good weekend.

 

[lgelb]

No, that is not worrisome.

 

[concernedman]

Hi all!

Just wanted to give you an update since I had my 2nd EMG today.

The Doc Said that it wasnt ALS but something wrong with the shoulder muscle (he shall give me the final anseer next week), probably several pinched nerves that caused the damage due to the hard load on my body from
Climbing.

So I guess I must work on my anxiety and let this pass now.

Thanks to you all for you endless support!

Best wishes,
Peter