6 months in. Symptoms progressing. Doctors perplexed

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Artie1217

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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.
 

KimT

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It doesn't sound like ALS at all.

Topamax can have some pretty nasty side effects and is not for everyone. I tried it for migraine but it made me "stupid." I couldn't remember things so I tossed it out.

My niece has a tremor in both hands. It runs in our family. My grandmother had a tremor in one hand and she lived to 95. My mother's hands shook so much her PCP prescribed Inderal, a beta blocker. It helped her.

All I can recommend is that you take ALS out of the equation and continue to work with your doctors to figure out what is going on. The fact that Xanax worked leads me to believe at least part of it is anxiety. Go ahead and get the MRIs.

In the meantime, get good sleep, cut out caffeine, exercise, eat healthy food, cut out junk food, and drink plenty of H2O.

Best wishes.
 

lgelb

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Hi Artie -- could we see the EMG report with ID removed? That might make us more helpful. Like you, we can't make much of a contradiction.

As you know, Xanax may help twitching while degrading, say, walking. If the Topamax isn't doing anything, I wouldn't continue it, but it should be tapered off, not dropped cold turkey.

Why is your PCP talking about MRIs? Are you not being followed by a neurologist?
 

Artie1217

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Thanks for the replies. Here is all I have in my online records from the EMG:

“median ulnar peroneal and tibial motor amplitudes distal latencies
conduction velocities and F responses normal. Left H response normal in
the leg. Sural median and ulnar sensory nerve action potentials normal on
the left.

EMG of biceps deltoid brachioradialis EDC FDI ADM, vastus
lateralis medialis tibialis anterior medial gastrocnemius and peroneus
longus are unremarkable. No fasciculations or adventitial movements
noted. Lumbosacral paraspinal EMG thoracic paraspinal EMG completely
unremarkable. No fasciculations noted. EMG of left orbicularis auris
muscle unremarkable. No fasciculations are syndrome of continuous motor
fiber activity seen.

Impression: electrical findings do not reveal a syndrome of continuous
motor fiber activity radiculopathy or motor neuron disease.”

So when this all began I first saw a movement disorder specialist who then sent me to a neuromuscular specialist for the EMGs. Since he’s been unable find anything remarkable on the EMGs, he has sent me back to the movement disorder specialist. He is the one who thinks something is going on and prescribed me the meds. I go back to see him again in May. I went to a PCP simply because I didn’t have one and wanted someone else involved for the big picture.

The trouble walking has been the hardest thing to ignore so far. My left hand is the more symptomatic so I’ve been able to compensate with the other since I’m right handed, but...once walking seems as if it’s becoming compromised, I’m getting pretty scared.
 

Artie1217

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Oh and the slight walking trouble began BEFORE I started taking Xanax or anything else so as much as I’d love to blame that, I’m afraid we cannot. Plus I only take the Xanax 3-4 times per week. Trust me when I say I’d love to take it every day, but my neuro doesn’t want me to overdo it.
 

lgelb

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I wasn't blaming your perceived walking issues on Xanax, but rather pointing out that it can be a safety issue if you have them. It's also a powerful drug that causes dependence long-term.

The EMG findings you posted are completely normal, so not sure where "irregularity" comes in and certainly no cause for alarm in re ALS. Shaky legs on stairs can represent anything from anxiety to needing more water.

In short, this seems very much like the wrong place for you. As others have said, I would go back to the PCP, reset the plan, and do some empirical work to see what might make you feel better overall. If you really have a movement disorder of any kind, it will make itself evident more clearly, but since the mind controls the movement of voluntary muscles, all else being equal, it makes sense to explore the conclusion the EMG is pointing to first: that you do not.

Best,
Laurie
 

Artie1217

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Thanks again for replying.

The “irregular activity” I’m referring to was stated by the neuromuscular specialist performing the EMG. As you can see, he did not include that verbiage in the official report. He openly used that phrase several times during the exam, but then referred to it as “textbook clean”. He was a bit strange as many neuros seem to be in my brief experience. I pointed out how that seemed to be contradictory and he naturally just kind of brushed me off.

He and several other doctors I’ve seen have been trying to blame this on anxiety since it began, so it was very liberating when the movement disorder specialist told me he has seen physical progression and believes there is a cause. I’m sure anxiety exacerbates it, but I know my body and SOMETHING is definitely wrong.

You are very likely correct in saying this isn’t the place for me, but I simply wanted to know if anyone has seen a pattern like this lead to ALS. Things just seem to keep getting worse and my fear is that since I’m so young my body is fighting off whatever it is and it, therefore, still can’t yet be clinically detected. I truly hope I’m wrong.

Thanks again for your time.
 

Vincent

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You seem to have something going on worth exploring with your Doctor. It just isn't ALS ( see part where the Dr said no evidence of motor neuron disease aka ALS. Not knowing anything but ALS, we aren't in a position to help. Good luck figuring out what's going on. Just relax and run with ALS being ruled out.
Vincent
 
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