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brendon

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Joined
Jul 26, 2017
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Learn about ALS
Country
US
State
ny
City
rochester
Hello,

I've been trying to put off posting here. Like many here, i've read and read and read. Medical sites, aboutbfs, and of course this site. I've gotten to the point where my previously diagnosed anxiety is making me lose sleep and worry uncontrollably throughout the day.

I am a 24 year old male. I am overweight, and drink a lot of diet coke. I abuse alcohol.

With that out of the way, I first noticed a few twitches sometime in May. They quickly spread across my body, head to toe, even my tongue and scalp.

I went to my doctor and he did an exam, and told me everything was normal. He did the usual strength pushing tests and stuff, looked at my tongue and stuff. Only problem was that this was early in the morning, and I wasn't twitching at all. Told me to come back if I still had them and they were bothering me in a few weeks.

They kept spreading, mostly in my calves which twitch almost constantly all over them. I went back, he did more tests and said he thought I was fine but that I could go to the neuro if I wanted to get full closure.

I went a month later (the 13th of this month), and he did a bunch more strength tests and asked questions and stuff. But the appointment was at 8 am, and of course I had no twitches. Told me I was fine.

Went back to my gp for a follow up, and he gave me some anxiety meds.

A couple days ago, I noticed some significant muscle differences in my left hand. Right below the thumb there is a deep indentation that is not present on the right hand. At the base of the thumb there is a lot of baggy skin where on my right, there is only muscle.

Examining my hands from the back, the valley between my left thumb and forefinger is much deeper than my right, and there is a small muscle twitch that is literally in rhythm with my heartbeat. There are several dents in the muscle of the fat part of your palm below the thumb that aren't there on my right hand.

My fingers on my left hand tremble when I extend them. It isn't as easy to extend them as my right hand. My ring finger and thumb particularly.

Most of the time when at rest, there are feelings like buzzing or very faint twitches at the base of my thumb and between the thumb and forefinger. They are not visible.

My anxiety is through the roof. I know the statistics. I've read the posts. I think the only thing that may ease my mind is an emg, but both my doctor and neuro have said that I'm fine, they never even saw any of my twitches.

One other interesting thing to note is that when flexed, there's a muscle on the outside of my right thigh that just goes like crazy, it's like a twitch that only activates when i flex.

It's affecting me profoundly. I woke up at 4:30am this morning and just laid there hyperventilating, sweating, and having bad thoughts.

i don't know what to do. Thank you for your time reading this. I do not mean to be disrespectful of you at all and hope I did not offend.

here are a couple pictures of my hands for reference:

right
http://imgur.com/QagazHg

left
http://imgur.com/5h5cB4e

right
http://imgur.com/JnuD6zS

left
http://imgur.com/DUUtUZG
 
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I should mention that other than my shaking I haven't experienced weakness yet
 
Brandon-

First off- you need a referral to a psychiatrist. Not because I don't think you have other symptoms to be concerned about, but because you will not be able to sort out what is caused by high stress and anxiety and what is possibly signalling a structural or neurological issue. It sounds like you have some self care issues with regards diet, exercise and alcohol/substance use.

You might want to get a program going with a physiotherapist in order to track strength, reflex and range of motion stuff. Once you have established a baseline of the listed, you can work with your physio to track progress and note any structural concerns.

Posting here is a first step in getting healthy.

I personally don't see any ALS here, but you do need to continue to seek medical attention in order to sort out the anxiety and weed out what is anxiety related and what is something needing further attention.
 
Thank you for your reply, it's very much appreciated. I agree about the psychiatrist. About exercise and physical activity, I've actually been avoiding it

I went to the gym frequently for about 8 months, stopping last March due to losing my workout buddy and lack of interest. I haven't been exercising recently because I was worried that the muscle I has built up (up to 270 pounds squatting)would mask any weakness of symptoms that might help me figure this out.

I've stopped drinking as of a few days ago and plan on keeping it that way for a while. I've noticed alcohol doesn't really impact my twitches the following days. And yes the anxiety is huge. I feel sort of like it's so prevalent that I don't believe it could get better without an emg or something.
 
Brendon, I know about what they call Split Hand Syndrome... hand atrophy.

One thing you can take off your anxiety list. Your hand looks fine.

PS. You don't have any calluses so it ain't hard physical work that has caused any problems :)
 
thank you very much for you reply, al! it does help the anxiety a bit to know that someone who knows their stuff doesn't see atrophy.

it's just one thing after another with this, isn't it? i'm sure you've seen countless people like me saying the same things with the same symptoms. since i've posted this, my tongue has been going nonstop, even at rest. it's mostly the tip of my tongue, but at times different parts either twitch or tingle or...burn a bit? sometimes i can't even feel it twitch, though i see it...very strange sensations. at times it even feels like my entire tongue is just vibrating intensely.

but funnily enough, though most undiagnosed twitchers consider tongue twitching the most horrifying, it doesn't really bother me that much since i know that als doesn't cause sensations like i'm feeling, i have no trouble swallowing or speaking, and i've seen videos of real tongue fasciculations. plus the statistics of me 1. having als at 24, 2. having bulbar, 3. presenting with twitching as the first symptom, are so astronomical that it may never have happened before in the history of the planet. i do have some trouble breathing with even moderate exertion, but i chalk that up to the season and my asthma.

thank you very much for taking the time to reply to me. posting here has taken a weight off of my shoulders, though obviously i am still dealing with severe anxiety. BFS is "benign" in only the physical sense, it's playing havoc with my psyche.

i am going to seek a referral to a psychiatrist as shift suggested, and hopefully i never have to post here again.

wishing you the best,
brendon
 
Greg......Please lock this thread cuz I think he might not be done. I ask this in the nicest way possible.
 
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