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Vals3

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Joined
Aug 28, 2018
Messages
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Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
WA
City
Redmond
Hi everyone, I am a 30 yr old who has been having some worrying symptoms for the last 5-6 months. I have been to my GP who referred me to a neurologist, and I have an appointment in a couple of months. I post hoping that someone has some input on my symptoms, and to see if they sound familiar to anyone.

This is how they progressed (text brick incoming):

-Around March-April I noticed my right leg "buzzing" every now and then. Usually once per day or so, didn't think much of it.
-In April I started getting twitches on my left leg. They weren't constant, but they were frequent. About 1-2 twitches every 10-20 seconds, and some times they would stop for a couple minutes. There were some that I could see and not feel, and some that I could feel and not see.
-In early May, tiwtches showed up on my right leg, same frequency as my left leg. At this point I also noticed some difficulty swallowing and voice-related issues. My voice was strained easily and I wouldn't be able to talk using certain pitches. I would notice because I would try to say something on those pitches, and I would have to change pitch because my voice wouldn't come out. I also developed trouble swallowing, in the sense that sometimes it takes 2+ swallow attempts to wash down solid food. I had a similar problem 4 years ago, but it was a lot milder. I got tested for GERD back then but results were negative.
-Late June fascics moved to my feet. The ones on my feet are quite fast and feel like I have a bunch of ants running round. They are not constant, but they show up several times a day for a few mins.
-In June also my eyelid started twitching, again not constantly but several times a day, for a few seconds.
-July, fascics spread to other places. Abdomen, shoulder, face...these are very rare and maybe happen one or twice per day. Sometimes a few days without any twitches/fasciscs there.
-Early August is when it gets scary. In the middle of the day I get constant fasciculations on my left hand. Quite persistent and annoying. Every time I would grab something, I would feel a thousand ants crawling on the palm of my hand and on my fingers. No numbness or tingling, just the feeling of movement under my skin. Sometimes they are visible, sometimes they are not. At the same time my index finger gets a pretty strong tremor every time I extend it. I also get a pretty constant fascic under my pinky, which I can feel specially in the morning.
-At this point I start developing a dent below my pinky on the left hand. I usually dont care about dents since I know bodies are not symmetrical, but this one was not there before. I sent a picture to my father just to check if I am blowing things out of proportion. He confirmed that it does not look normal. Dent has been increasing in size since I found it. One thing that really scares me is that the strongest and more constant fasciscs happen right where the dent is growing.
-After a couple of weeks, some of the buzzing appears on my right hand, but it's a lot milder than on the left, and some days it's not even there.
-At this point I go to my GP, who checks my strength, as well as babinski and some other neurological tests. They are normal. I show her the fasciculations on my left hand right there. She checks my CK, which comes back quite elevated (542, max being 220) and refers me to a neurologist. Appointment set for October 25th.
-This might be anecdotal and might not be related, but I will mention it. During this past week, I have been feeling like my left arm muscles are sometimes contracted for no reason. No pain or cramps, and I can move the arm with no problem, it just feels tight. I also had *one* episode where after exerting that arm, the muscle remained contracted (as in tight) for almost 30 seconds. I could move my arm no problem, but the muscle was tight like I was lifting weights with it. No cramp or pain during this episode, and it only happened once.

So as a summary:
-Summary of fascics: legs (very frequent), feet (ant-crawling like, a few times per day), left hand (almost constant), right hand (few times a day), bicep (not frequent), abdomen (not frequent), eyelid (not frequent), lips (not frequent).
-Solids get stuck in my throat and sometimes i have to swallow 2+ times. Voice goes out when trying to use certain pitches at the end of the day (and I barely talk during the day, I am a computer programmer).
-Elevated CK (540 out of 220)
-Dent under left hand pinky (confirmed by my father), with very frequent fasciculations in that area.
-No cramps.
-No weakness, or at least no more weakness than I always had. My left hand has always been a lot smaller than my right (right is dominant), and has always had less strength.
-No issues pronouncing words so far, no fasciculations on the tongue either (that I have seen). I get the impression that it is hard for me to pronounce R sounds, but might just be my perception.

So that's pretty much all. Thank you all for taking the time to read my post, and I appreciate any input you may have.

Best,
Jorge
 
Without actual weakness or muscle function failure, you don’t need to worry about ALS. Twitching is common, nonspecific, and meaningless. Sure, let the neurologist check you out, but I wouldn’t lose sleep over this.
 
My mom has a pretty rampant case of benign fasiculation syndrome, as in twitches randomly popping out all over most of the time for over 50 years. I thought for years I “almost” have it but recently my Doctor said it appears often enough for me to be an actual diagnosis. Most common Neuro “condition” there is, and totally mean less but sometimes annoying. I too sometimes get “buzzing”, a known variant.

In other words, I think you have little to fear and many MDs would not have done the Neuro referral but go, it will make you rest easier.
 
Thank you very much Karen and Lenore for your replies, they do make me feel better and I really appreciate you taking the time to answer my post. I guess my main worry are the elevated CK levels (540 when the max was 220) and the dent in my left hand, which is pretty obvious by now and has twitches in it almost all of the time. I was dealing with the twitches no problem, but those two issues (added to all the twitching) sent me into a panic. The long wait for the neurologist of course doesn't help.
 
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