Concerned

Status
Not open for further replies.

samwell1908

New member
Joined
Aug 29, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hi all,

First - to anyone living with this disease, caring for someone with it, or in any other way involved, my heart goes out to you. Thank you for your involvement in this community and I wish the best for everyone here.

I'm a 36/M with some concerning symptoms which have been 'building' over the past few months. My primary concern is with my right arm/hand not working like it should/used to. It feels 'clumsier', for lack of a better term. I'm an athlete, but feel like if I went out and threw a baseball or football, it wouldn't go where I wanted it and would look funny. I also think I notice my right leg being a little 'heavier'.

I first noticed there may be a problem a few months ago, when my handwriting felt a little bit labored/off. I'm still able to write, but my right forearm seems like it gets tired/fatigued so quickly. I am also a pianist, and a song I learned/mastered just 3-4 weeks ago I'm now unable to play - because my right hand simply will not strike the correct keys. Left hand is fine.

I have seen neurologists 4x since July, with varying levels of physical exams at each. I will be going in for an EEG tomorrow, and an EMG on Friday.

It just feels like this is progressive, and getting a hair worse every single day. And I'm concerned that the neurologists couldn't detect anything in their physical examinations because I'm in the very early stages of ALS. There was no clinical weakness observed, but I did a test to see how much I could lift with both arms, and my left arm - which should be weaker since it is not dominant - can lift more weight than the right. This had never been the case before.

Any thoughts?

To clarify - I've seen 2 separate neurologists, 2x each. The first visit, in July, was due to primary complaint of pain spreading through the right side of the body with no apparent cause. At that time, I mentioned that my right arm felt 'off' - almost like it was a plug that was halfway plugged into an outlet -- still working, but not quite right. The 2nd vists were 2 months later, where I presented with declining fine motor skills in my right hand, and my arm feeling even more 'unplugged'.
 
I would say that the doctors seeing you have a lot of training and experience.
It would be useful to ask them what they think once these 2 tests are done.
Remember both EEG and EMG are used to diagnose a whole host of things, nearly all of them treatable.
Go read our sticky post as it will help you.
My thoughts are that doctors are trained to detect clinical weakness and ALS doesn't come on with all these feelings of stuff that you describe.
Let your doctors do their job and let us know the diagnosis as it helps others who come and search here endlessly.
 
Thank you for your response ❤️. I will circle back once I have results.
 
Sorry for the additional response prior to EMG/EEG results, but just wanted to ask for some clarification.

My right leg feels like it is progressively getting weaker and losing stability. For instance, it starts trembling when I try to balance on just my right foot. Further, my right foot seems like it is harder to lift than the left when walking. It is noticeable. I know that ALS is about failure, not things become more difficult, but is it not the case that things become progressively more difficult to a point where they simply cannot be done?

I'm also taking typing tests daily to measure vs a baseline, and I have been trending downward (fewer words per minute) over the last month. I've also noticed that the period key is now being struck by my index finger, instead of the ring finger. It should be the ring finger pressing this key, but I suppose that as it became more difficult (that finger seems to be a problem child), my brain subconsciously designated my index finger to press the key instead. Could it be that other muscles are stepping in to take over for one that's no longer working correctly? I can still press the period key with that ring finger, but it's difficult and it no longer seems natural. That finger shakes when I lift it.

I guess my big question is - and i did read the FAQ - but isn't it possible that MD damage is happening and surrounding muscles are able to compensate for a while?

This unilateral, seemingly progressive weakness (or minimally, fatigue), has me most worried!
 
Stop self-testing, which can literally do more harm than good. Still not sounding like ALS. I will delete any further posts pending test results.
 
You are fixating and that invariably leads to 'discovering' all kinds of new things.
Please, stop now, wait for your doctors to work this out, and let us know the result.
 
My NCS and EMG were both normal. I'm not sure what's going on with me, but it's likely all in my head since I've also passed all of the physical exams and had a clean MRI of my brain and neck.

I think there are two camps of people: those that feel relief with a clean study, vs. those that start to question the results. It's clear which one I fall into.

My first thought was to question the EMG. I did not feel a sense of relief. The DO that was running the test had difficulty during the NCS, constantly moving heat packs around on my hands to make sure she could get an accurate read. Then issues with the electrodes not sticking, asking her tech for a different type of electrode (which they didn't have on hand) before making do with the originals.

In the EMG she couldn't find the right spot in my forearm - no signal/noise when I moved my fingers - so she moved to a different spot, and all was good. These things floated around in my mind. What if she did it incorrectly? What if she was having a bad day? What if she figured - "he's only 35, there's no way he has disease, so I can get by with not double-checking my work". I wanted to look up her credentials. Was she qualified?

But then it kind of hit me....the world would have to be out to get me, and I would have to have the worst luck of all time to have this at 36 AND pass physical exams from multiple neurologists AND get pass an EMG while I was having 'symptoms'. I need to let go. I am fortunate enough to have this be something else. And I know that those afflicted with this disease would do anything to be in my position.

Thank you to all that participate. I can't begin to imagine all that you have gone through.
 
Status
Not open for further replies.
Back
Top