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1875

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Learn about ALS
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London
Hi. =]

A 20 year old from the UK here. I've had a some worrying symptoms over the past 6 months and I was just looking for some opinions from people who know what they're talking about.

About 6 months ago I noticed a twitch for about a week in my face that didn't go away. Eventually it disappeared, but within a couple of days I had a widespread onset of twitches. I was basically twitching everywhere. With a visit to the Dr's I was diagnosed with anxiety with virtually no questions asked. And admittedly I am quite an anxious person, but I do believe I amen't imagining these symptoms. Haven't been back to the doctors yet but I have an appointment and plan to ask for some proper testing.

Anyway, I noticed a week or two ago that my hands are looking excessively skinny. I am quite a skinny person but my hands have never been this thin, I'm sure of it.
I haven't had any noticeable weakness as far as I'm aware. Not sure if this is normal or not?

Yfrog - dsc00181j
http://img524.imageshack.us/img524/3610/dsc00184t.jpg - This is a normal place to have an indentation I know, but as you can see mines is a lot bigger than normal.
http://img684.imageshack.us/img684/5455/dsc00183eo.jpg

Palms of hands - which are fine I think

http://img9.imageshack.us/img9/4407/dsc00187xb.jpg
http://img695.imageshack.us/img695/7277/dsc00188q.jpg

I have more photos but as you can see they aren't particularly good quality.
Does this look like typical atrophy to anyone that posts here? I should mention that both hands are almost identical, is this typical of ALS or is the atrophy usually only on a single limb initially?

Thanks for taking time out to read this. Obviously alot of you have got alot more important stuff to be attending to so it's really appreciated that you've taken time to read/reply to this.
 
Dear 1875,
I'm sorry you're having health scares that have led you here. The PALS will be able to speak to your symptoms better than I can, but would encourage you to not get too ahead of yourself. Being diagnosed with MND/ALS is, often a slow process. The twitches as an isolated symptom does not mean ALS, and I have seen in my own family, how anxiety can manifest itself physically with twitches and other physical symptoms-that doesn't make them less real. The good news, is that if they are due to anxiety, you can learn some techniques to reduce or get rid of them by learning ways to manage your anxiety.

If it's been 6 months since your last appt, and you have new symptoms, it would be reasonable to make a follow-up appointment. Just do yourself a favor, and stay off Dr. Google! It's a gauranteed way to make your anxiety go into overdrive!

Peace,
Melody
 
I've been having the same issues (anxiety over a possible diagnosis) as you. Here are my two cents:

If the doctor said that there was nothing to worry about then there probably isn't. Widespread twitching is relatively common. If you had some sort of weakness before the twitching began, this would be cause for worry. Not perceived weakness mind you, but clinical weakness. I have widespread fasciculations my self that occasionally like to rest in a single spot and then move on. It's much more likely to be related to stress and anxiety which it sounds like you have plenty of.

I think you're doing exactly what I've been doing lately and obsessing over every possible place where atrophy may have occurred. I've even gone so far as to try to find recent pictures of myself to compare what my body parts looked like then to now.

I'm often absolutely sure one part of my body had experienced shrinkage but weeks have passed with no signs of weakness. From what I've read and largely just from the logicality of it, weakness should occur before atrophy sets in. If there is "atrophy" first, it may very well be nothing more than the muscle weakening after not being used for a while. After all, if you don't work muscles out they start to lose definition. This doesn't mean motor neurons are dying, just that a workout regimen may be in order.

I really hope you can get over the anxiety of this. I've been having an extremely difficult time with it myself. I keep focusing on various parts of my body. It moves from my tongue and bulbar areas to my left foot, to my right hand. Even though I know this is not how ALS generally presents, I can't convince myself that there is nothing wrong with me. I keep fearing that once I think this, suddenly the true symptoms will set in. Try and deal with the anxiety is my best piece of advice.

God bless,
Colin
 
Thanks for the comments everybody. My appointment is this coming week so I'll let you know how I get on.
Notice that my fingers seem to tremor quite a bit. I had initially thought this might be an anxiety thing but there's definitely fasciculations on the back of my hand, and I'm pretty sure this is causing the finger movements. The worrying thing is that they seem to be pretty much constant, and it's my hands that seem to be losing muscle mass.
Is it normal to have bilateral symptoms at the beginning of ALS, because it seems both of my hands are affected.
 
From what I understand, bilateral symptoms are quite unusual in early ALS. Usually it starts in a single limb.

Could you possibly have a vitamin b1 (thiamine) deficiency? Beriberi can have somewhat similar effects, though I'm not sure if this would account for everything. I had it once when I was much younger and it created a lot of interesting sensations in my hands.

Here's some wikipedia information if you want it : Beriberi - Wikipedia, the free encyclopedia
 
Sorry, everyone. I'm back and my worry of ALS persists.
I was at my GP earlier in the week and relayed my symptoms to her. She asked me exactly what I thought was wrong with me and I said "ALS". Her reply was, "what's that?". Obviously that never put a huge amount of confidence into me.
Anyway, she asked how I was feeling etc etc and I told her - "I'm never going to get better as you're treating me for anxiety when I think there is something physically wrong with me. Citalopram might be a good anti-depressant, but I doubt it has the ability to change my entire mindset(providing there is nothing wrong with me and I am just imagining it)".
Anyway, I had told her I thought I had Ankle Clonus, and was afraid the intermittent swelling I get in my right leg was due to spasticity. I also mentioned that my bodywide twitches were worse than ever.
She never tested my reflexes or anything. Must've just dismissed my worries as soon as she heard them. And I thought Doctors were meant to treat the symptoms as physical before they went down the mental route.:-(


Anyway, I hate to use this forum for advice on something that could potentially be completely trivial compared to ALS, but it seems you guys are far more capable of informing me on whether or not I should be worried than my Doctor.
When I'm sitting down with my heels raised off the ground, and I lower them slowly, I reach a point where my legs start to bounce involuntarily, the left moreso than the right. I've read some stuff on the web(bad idea I know) that attribute this kind of leg bouncing to ankle clonus, but I've also read that "Theres a point at which your leg will invouluntary judder up and down in a small space. About an inch or so. If you get it right, you cant stop it, it does it it's self. Bit like the nerve in your leg doctors hit and your leg kicks out."

Can anyone that experiences clonus shed any light on it for me?
 
Well fear can make you quite jumpy and mind can play some die hard tricks...

yo got to draw a line somewhere
 
Honestly, I would find another doctor if I were you. You really shouldn't be worried about ALS at this point.. You shouldn't be googling, you shouldn't be trying to figure out if your shaky leg is caused by ankle clonus, etc. You should be speaking with a qualified doctor (she didn't know what ALS was...seriously?)


You need a doctor who will do a thorough exam; blood work, EMG, clinical tests, etc. Twitching is usually benign, but it can be caused by dozens and dozens of different conditions, such as thyroid problems or vitamin deficiency. You shouldn't even be thinking about ALS, but that doesn't mean you shouldn't investigate your concerns with a good neuro to see if there's something else going on.
 
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