Hi all. Brief recap:
Sept 2017 - ring finger twitch/tremor starts
Oct 2017 - spread to other fingers
Nov 2017 - unremarkable EMG
Dec 2017- tremor spreads to other hand
Feb 2018 - repeat EMG unremarkable in hands and arms, but “irregular” in face and leg...yet somehow simultaneously considered “textbook clean”
March 2018 - sent back to movement disorder specialist who acknowledges after 6 months this is NOT all just anxiety and that I definitely have something going on and thinks whatever is happening in my hands, neck, and legs is all related, but doesn’t know what it is. That is why I’m here.
For the record, I’m 27. Now I know what you’re thinking: 27 year old with two clean EMGs, “no chance”. I’m fully aware the odds are slim to none and, despite my return here, I’ve gotten my head straight for the most part. I’ve only returned to ask if this pattern of symptoms is worrisome because, at this point, even the docs can’t tell me.
My initially-affected hand just keeps getting worse. Typing and texting and whatnot is becoming concerningly difficult. Whatever is up with my neck is still going on which I’m fairly sure began around the same time as the hand issues. If I flex the muscles in my neck even slightly, they spasm and contract and tremor violently. That now happens when I engage just about any muscle in my body; even my glutes, for Pete’s sake.
Perhaps the scariest thing that started about two months ago, however, has been difficultly walking. It’s very subtle, but I can tell it’s off. When it’s not subtle at all, though, is while walking down stairs. When doing so, my thighs shake and wobble and make my legs feel like they’re going to buckle.
My PCP told me MRIs are likely in my future. I told my primary neuro that a relative gave me some Xanax to try and it helped tremendously. He was very perplexed by that because he is certain this is not strictly anxiety as he has witnessed the tremor progress and even said he was shocked it has worsened in such a short period of time. In addition to more Xanax, he also prescribed me Topamax which so far hasn’t helped much.
So I guess all I really wanna know is if this sounds like anything ominous. My understanding of ALS is that it would not likely be so widespread. At this point it seems like whatever I have going on is attacking virtually my entire body. Slowly but surely one thing after another pops up and I feel like I’m going downhill even if at just a snail’s pace.
Thank you.
Sept 2017 - ring finger twitch/tremor starts
Oct 2017 - spread to other fingers
Nov 2017 - unremarkable EMG
Dec 2017- tremor spreads to other hand
Feb 2018 - repeat EMG unremarkable in hands and arms, but “irregular” in face and leg...yet somehow simultaneously considered “textbook clean”
March 2018 - sent back to movement disorder specialist who acknowledges after 6 months this is NOT all just anxiety and that I definitely have something going on and thinks whatever is happening in my hands, neck, and legs is all related, but doesn’t know what it is. That is why I’m here.
For the record, I’m 27. Now I know what you’re thinking: 27 year old with two clean EMGs, “no chance”. I’m fully aware the odds are slim to none and, despite my return here, I’ve gotten my head straight for the most part. I’ve only returned to ask if this pattern of symptoms is worrisome because, at this point, even the docs can’t tell me.
My initially-affected hand just keeps getting worse. Typing and texting and whatnot is becoming concerningly difficult. Whatever is up with my neck is still going on which I’m fairly sure began around the same time as the hand issues. If I flex the muscles in my neck even slightly, they spasm and contract and tremor violently. That now happens when I engage just about any muscle in my body; even my glutes, for Pete’s sake.
Perhaps the scariest thing that started about two months ago, however, has been difficultly walking. It’s very subtle, but I can tell it’s off. When it’s not subtle at all, though, is while walking down stairs. When doing so, my thighs shake and wobble and make my legs feel like they’re going to buckle.
My PCP told me MRIs are likely in my future. I told my primary neuro that a relative gave me some Xanax to try and it helped tremendously. He was very perplexed by that because he is certain this is not strictly anxiety as he has witnessed the tremor progress and even said he was shocked it has worsened in such a short period of time. In addition to more Xanax, he also prescribed me Topamax which so far hasn’t helped much.
So I guess all I really wanna know is if this sounds like anything ominous. My understanding of ALS is that it would not likely be so widespread. At this point it seems like whatever I have going on is attacking virtually my entire body. Slowly but surely one thing after another pops up and I feel like I’m going downhill even if at just a snail’s pace.
Thank you.
