Facing ALS Fears Again

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CollsMaroon

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Well, here it goes.After a few months reprieve from fearing ALS, it's back :(Looking for opinions/suggestions/encouragement here...Left shoulder is suddenly giving me issues. Possible weakness, in that I can still do everything with it, but it feels like it requires more energy than with the right shoulder. Came on suddenly, as of a few days ago. Has sent my fear through the absolute roof.I will say this - I experienced the same issue last year, also around this time. At least, from what I recall the feeling was the same. Freaked out then too, and has EMG performed. EMG was fine. That was just under a year ago. They suspected some sort of rotator cuff issue. Seemed to resolve completely after good EMG. So, is it possible that in a cruel twist of fate, what was the issue last year has now returned in the same spot, but as ALS?? Boy wouldn't that be crap.
 
I'm not a doctor, but what you're fearing seems highly unlikely.You say that you had the same experience with your left shoulder a year ago and it eventually got better? I'd be willing to bet money that it is not ALS. If it were weakness due to ALS it wouldn't get better. It would just get worse, and it would spread. Sounds like there's something else going on with your shoulder that's making it feel this way. There are a million and one benign conditions that can cause stuff like this. Unfortunately, for those of us with BFS all of these every-day, non-lifethreatening issues seem to trigger the anxiety mill all over again.Hang in there!John"When you're going through hell, keep going!"Sir Winston Churchhill
 
I guess what freaks me out the most is that I have to believe that when weakness begins, it does feel like what I'm feeling - that more effort is required - prior to simply not being able to do something. Any pointers as to how indeed I would know if what I'm feeling is true clinical weakness?
 
Yeah, I guess I do use the word feel, as some of my muscles FEEL as if they're straining, when doing things like holding something out in front of me.
 
Hi Colls,I also had this issue at one point during my BFS journey. My whole right arm actually felt like I had to put a lot of effort to just keep it up. For example, when I would drive, it felt like my arm was really struggling to stay on the steering wheel, so I'd have to rest it. My problems extended from my shoulder blade all the way down to my hand, it was so strange.These issues have subsided for now and hopefully stay away because it sucked!Hope you feel better, I'm sure it's just a nasty little BFS flare that will soon pass.
 
Would the EMG done just under a year ago been able to pick up on issues happening now? I've read in places that they are predictive for quite a bit of time prior to symptoms appearing...
 
Just so that I'm clear on the clinical weakness definition - you simply would not be able to do something? For instance, right now, if I hold something straight out in front of me with my left arm, it feels tired, shaky, a little achy, etc. Does this sound like clinical weakness?
 
Colls, if you want to check yourself for true clinical weakness, I think it's pretty simple. Just ask someone to put a little force on the upper arm on the side you believe to have weakness. Then try to raise your arm while this personn is applying the counter force (not a heavy one, just a light one). That's how they checked me at the ALS clinic. If you can lift your arm with this counter force applied by someone else then you don't have clinical weakness. Again, the other person should not apply a strong counter force, just a really light one (I insist because I don't want you to freak out for nothing :)).I am so sure you are fine, and remember, you are so so so young... Oh, and please, don't do this every single day, multiple times a day. If it can ease your mind, do it one time, for good, and then no more than once per week.
 
Yes Christo, I have been doing this test...quite often. I will have my husband apply the counter force to both arms to see if they are the same or not. He says the strength feels the same, I say I have to put out more effort on the left arm. He does apply what I would describe as more than a small amount of force. I can pretty much resist it, though it hurts a bit on the left side. Not like a true muscle fatigue hurt, more like an ache...mixed with a muscle fatigue feeling.I know what you mean - the tests we do ourselves are soo much more rigorous than what the doctors do. The arm test, they push down just lightly, and for such a short period. I guess they figure that if something is wrong, that's all it would take to notice it?
 
Colls, neuro are not checking if you need to force more, they check to see if while they apply counter force you can lift your arm. If you can, then no weakness, that's it.Please try to relax, you are OK :)
 
So, just got back from the doctor, where I went for an EMG referral. I'm really hoping they will agree to do one, since the doctor seemed more focused on my anxiety than on my issue.He did a couple of strength tests and said that both arms felt the same, which is incredible as to me there is such a difference. He did say that if there were a subtle strength difference, his test probably wouldn't pick it up. I'm trying to tell myself that if it were ALS, the strength loss would not be subtle at all, but I'm kind of having trouble believing it...
 
Two things to add to my post here, hoping someone can help.1. Would the shoulder be a likely first place for als to show up?2. Can a rotator cuff issue be present without much pain?
 
Colls_Maroon,Self testing is a thing I've done for the firtst 3 months into *** fear. I could barely walk for some days/weeks after jumping for minutes (it was wsupposed to be 15 seconds) on each leg.Recently I invented a new strength test - doing pushups on my fingers - I thought it will help testing my entire hand strength (from shoulder to fingers). What was the effect - I feel my left hand and fingers are very weak and my my major worries has partially diverted from my right calf to ly left hand.Self tests work for a while, but we (the worriers) do self-test marathons which don't help us prove we are ok. Also from my personal experience neuro visits/EMGs help only for a short while. There are peple on this forum who never saw neuros or did EMGs, but their *** fear is similar to the ones who had multiple exams.My personal opinion is that since you are a member here since 2011, you had a period that you were OK, your doc today sad you are ok, then => you are OK, definitely no nasty!__Take care,Andy
 
Well, consumed by fear, unable to sleep, eat, etc, I went to the EMG clinic and basically made a huge fool out of myself. But, I now have an appointment for 3:30 today.It's funny, I really have no shame or pride when it comes to things like this. I was willing to throw myself on the floor of the office and begin wailing, if I had to. And let's just say the one receptionist, well, she does not like me at all. I honestly think they would have had to forcibly remove me to get me out of there if they weren't willing to let me come in today. Certainly not my best moment, but I got what I wanted. This is going to be the longest three hours of my life.
 
Test was normal. He said he didn't even see anything borderline.But then what got me freaked out was when he asked me if I wanted a second opinion...he said he was only suggesting this because I've been back to him so many times, and thus ain't sure if I was really able to accept what he was saying. These doctors need to learn not to make any comments that our brains could take and interpret in a bad way!I told him that if he was sure everything, then no, I didn't need another opinion. He said said that if I wanted him to, he could refer me to a neuromuscular disease specialist, but that he would be doing it only for my piece of mind. Of course I'm saying to myself, what if he's not sure?
 

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