I went down the rabbit hole. (For people that are scared they have ALS)

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bob1979

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For anyone who played doctor on the internet and stressed themselves out beyond belief maybe my short journey resonates.

FYI- because of what I literally just read on this website, I’m calm as Hindu cow now from that link mods keep sending to worried people that spells it out in Lehman’s terms that you’re fine. I feel a lot better about my situation.

So at least 2 years ago after I started my keto diet I’d get twitches if I didn’t hydrate properly. I’d get them in my arm and torso area and it would go away when I’d properly hydrate so I’d figured it all out or so I thought.

Fast forward to feb ‘21 and I started to work out again because I lost so much weight and I wanted to be a bit more fit looking. I hit the weights hard and was doing it daily which prob was a bad idea in hindsight. From this I reaggravated my triceps in both arms for which I have tricep tendinitis and my whole left arm would feel tight and have a numb feeling sporadically.

After the injury, I stopped working out completely and focused on diet up until Aug when I noticed a tick was firmly imbedded in the pit of my left knee. I panicked and scraped him out with a butter knife which was stupid in hindsight.

I shrugged it off and a week or so later I noticed my calf muscles were twitching literally 24/7 and I had mild weakness and pain in my left knee and ankle which was super weird. My walk felt funny almost like I was trying too hard to walk normal. My left leg felt tight and stiff and it was kinda worrisome to say the least.

Then one night I felt what can only be described as an electrical storm in both feet and legs which kept me up until 2am on a work night and I was exhausted. I looked at my feet and I had twitching on bottom of feet also. WTF!!

Then I went to dr google………..ALS!!! I read the stories, watched the videos and convinced myself this was what I had. I saw how people took 3-4 EMG tests and got diagnosed. I saw the stories of years long journey to diagnoses. I was floored.

Physically I could do everything, but the tightness and the feeling my left knee was gonna give out scared me. I did all the movements to make sure my limbs worked, I balanced myself on each leg, lifted things and everything seemed normal I guess. Over the next few weeks I started feeling twitches on my left arm and torso too. I even had occasional twitches at the top of the knee that fired off like a machine gun and then stopped abruptly.

Went to the doctor and he looked at me like why are u wasting my time ur fine. To shut me up he did blood tests and everything came back normal except I had a CK level of 427. (Normal is up to 200) Elevated but not enough to worry in his eyes since I was doing some heavy labor at work the day before. Not only that but I’m part African American and CK tends to be higher in this segment of the population. (Lyme test came back fine btw even though it was a number which made no sense to me)

So after that I’m worried why my CK is elevated because of course I read that CK sometimes can be elevated if u have ALS. So I decided to book an appt with a neorologist and figure it out and oh boy!!! The weeks leading up to that were stressful. U start making funeral plans and wondering how the hell you’re gonna drive home when he drops the bomb on you. I’d compare my legs and arms and find little inconsistencies and convince myself ALS is killing me. To me my left arm seems smaller than my right yet I’m right handed so what does that mean??

I went alone because the wife had to work which sucked. I don’t even remember getting there because my mind is racing. I remember looking at myself walk through the reflection in the window to see if my gait is abnormal while I waited. God knows what the receptionist thought of me.

The neoro glanced at my twitches and heard me out as I confidently spewed all my internet wisdom out that I’d seen over the previous weeks. He did the movement tests and reflex and thought it was unremarkable. I did the needle test and the other one where they send electrical signals through my legs, arms and feet. Everything is normal……….wait what?? How can this be?? And why does he seem so underwhelmed about it all?? All he said was you are fine and take another CK after a week of rest and we’ll go from there. He said even he gets twitches all the time and he self tested himself because he knows too much.

At this point my symptoms are:

1. Left knee feels tight, slight weakness, pain
2. Gait feels off. Left foot when I walk doesn’t feel right.
3. Left Ankle slightly hurts maybe slight weakness
4. Twitching: left arm, torso, both calves, both feet. Calves/feet twitching 24/7 and everything else comes and goes.

However, I can still move and use all my limbs normally so I’m at a loss as to what is going on.

Now comes my journey to find out why the hell these issues are even happening and it’s daunting to say the least. It’s been almost 3 months and it’s not subsiding, but not getting worse I don’t think either.

Next step: CK test and go from there…….
 

affected

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I can't figure out why you are posting this. This is an ALS forum and you have been cleared quite spectacularly it seems.
 
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