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Lukealvarado

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Jul 26, 2016
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Learn about ALS
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Washington
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Medical Lake
I will appreciate ANYTHING at this point. Thank you guys so much and I am truly sorry if this post comes off as ignorant or annoying or disrespectful to the people with ALS. But I have to get this off my chest! It's consuming my life really. I'm living a nightmare I feel.

Symptoms over the past 3 months: (May 1st-Present)

Fasciculations:

May 1st was my initial alarm for ALS as I had widespread body fasciculations. (Well that afternoon my neck muscles started twitching and then that night as I was laying in bed they popcorned all over my body). These twitches have covered every voluntary muscle conceivable and hasn't subsided since and has even gotten worse. These twitches range from "can't feel them but can only see them rumbling underneath the skin" to total "thumpers" that torment me as you can definitely feel and see them prominently. I get these on my face and lips too. None on my tongue however.
I'm a pre-med student with a ton of anxiety (Generalized anxiety disorder) and it was finals week when these twitches came on and so these fasciculations must be meaningless without weakness/atrophy I told myself. I chalked it up to anxiety or a vitamin deficiency (starting taking magnesium and calcium supplements). They haven't helped.

June-July Symptom Progression

Twitches persist and now I have leg heaviness and arm weakness. I can't truly describe it but running doesn't "feel" right. Walking up and down the stairs no problem and I know ALS is about failing not feeling but I used to be an avid runner (would hop out of bed and go for a 10 miler like nothing) and now my legs feel too tired (like there's anchors on them) to run a mile. I still cannot tell if this is perceived or clinical weakness thanks to my severe anxiety. There is a burning sensation accompanying this weakness as even right now it "feels" like it's harder to type and it's tiring my arms out. As far as I can tell no tremors when holding milk jugs or trouble buttoning shirts or turning car keys. So that's good.
BUT......


July 25, 2016 SENT ME INTO PANIC (Swallowing issues and Possibly Atrophy?!!) *At this point my nerves are into full overdrive.
At this point i'm 55% sure it's Anxiety, 44% it's ALS but now I'm 90% sure it could be ALS and 10% its anxiety

-Since the 25th, it takes me multiple attempts to swallow food, feels like food falls to the back of my throat when I don't want it to. (Though I am now hypersensitive about my swallowing). But food and liquids occasionally fall out the side of my mouth. Liquids making a weird sound/clicking and squeezing down my throat. Now I have stopped eating and drinking the amount that i need too. My speech is still fine however.

AND (MOST HORRIBLY)
My right arm (dominant) appears about 2-3cm smaller than my left arm which SCARES ME. This doesn't make sense as my right arm doesn't feel any weaker than the left but it's somehow smaller! When I flex the muscles on my right arm, the biceps/triceps are softer and smaller but when I flex my non-dominant left, the muscles are as hard as a rock. (Used to be a huge weight-lifter and my arms are definitely smaller now). Though I stopped working out approximately a year ago so atrophy is expected but how could my right arm be smaller?!

That's my dominant arm! And now that i think back, the majority of my arm twitches would happen on my right side, especially the Bi's and Tri's. (Though I would still get twitches on my left arm). God i'm terrified right now. Though I can only perceive weakness in my arms (no real clinical weakness yet but I'm terrified that's still to come!) My arms do feel tired and burn when I lift them up and go about my day but I am hypersensitive at this point with anxiety).

SO I GO SEE THE DOCTOR

He basically brushed me off as a stupid kid (no bed-side manners), kept telling me I was too young for ALS and gave me the strength and reflexes test (which he concluded was "fine".) But I feel like he ignored about half of what I said (he kept looking down at his watch and shoes). But he has me take a brain and spinal MRI anyway the next day and both come back clean?! But i thought it was the EMG that determines ALS? Now I feel like nothing will give me any peace of mind until I have that test. I'm going back to see a different doctor tomorrow.

Any words of advice or encouragement would BE GREATLY appreciated.
 
Hi bud-

I think you already know the advice you will receive-

Twitching means nothing. Read the thread titled "READ BEFORE POSTING"

You also had no baseline measurements of limb dimensions before you measured yourself last. Bodies are uneven at the best of times- ears are higher on one side, legs are longer, hands are larger on one side, finger lengths differ, etc. Only if there is a drastic reduction from a previous known measurement would this be notable.

If you look up "medical student" in this forum, you would see others panicking like yourself. When you study the human body from a medical perspective, there is a very intense realization that the human body is fallible and prone to thousands of terrible maladies. But that's only because you are studying what can go wrong with it. When you become a medical practitioner, you will come across many people experiencing what you, yourself, are right now. I can only sincerely hope you will treat them with the full understanding of what a full blown health anxiety attack feels like.

See another doctor if you must, but be sure to deal with your anxiety as well. Twitching is as indicative of ALS as a headache is for brain tumors. Not significant.

Best wishes.
 
It's embarrassing that a pre-med student would use google to diagnose something.
Google is pretty much the only way to go from twitching to ALS.

Read the Sticky, as Mike already advised.
Then lookup ALS Association and do further research there.
 
Luke, since you're still lurking, I guess you're looking for more input.

Here's my input: I wish you good fortune in your medical career. In the meantime, think about what changes have occurred in your life beginning May 1st. There's likely the source of your anxiety.

As for your doctor disbelieving you: Most of the practice of medicine relies on the history given by the patient, but patients are not medically trained, tend to be poor observers, and are too tied up emotionally to be objective. Good luck tomorrow.
 
Thanks everyone for your concerns and comments. But my arm size comparison raised concern from my PCP. I showed him pictures of what my arms used to be (3 months ago) and it was definitely smaller (dominant was smaller than left). I'm going to a neurologist soon not sure when though. I'll keep this forum updated. Guess all I can do now is live everyday like it could be my last now.
 
"Guess all I can do now is live everyday like it could be my last now."

You're not being logical at all. We've all told you that you don't need to be worried about ALS. A doctor also told you that.
 
Well this new doctor was concerned about my arm today and he's referring me to a neurologist. I guess I am being illogical but i'm no less afraid. I am sorry but I am just anxious for what the neurologist has to say.
 
You are being totally illogical.

A doctor being 'concerned' and sending you to a neurologist is a huge leap to being terrified you have ALS when we have told you repeatedly you have no symptoms of it.

Update us after you have had a full clinical exam, but do believe the neuro please, for your own sake.
 
I can see that you are not going to believe us no matter how many of us tell you the same thing.....you do not have ALS.

So get the EMG, don't post again until you get the results.
 
Finally saw the neurologist today and she couldn't find any evidence of weakness or atrophy anywhere though she noted that I had brisk reflexes but that they were symmetrical? Thoughts? Chewing and swallowing is getting harder though. I don't know if this is anxiety related or not. My EMG is scheduled for September 30th and I won't get the results back until October 14th.
 
> My EMG is scheduled for September 30th and I won't get the results back until October 14th.

Let us know when you have results.

Stay the hell away from Dr Google till then.
 
I'll put it this way. If it is ALS, there is nothing you can do. If it is not, then why are you worrying? Live each day to the fullest.
 
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