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tomjstones

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Hi all

I know Ive posted before but I wanted to give an update.

I got my MRI results - all normal. Strange that all I could think was "Damn"...

My fasciculations seem to have decreased slightly. Now I seem to get them pretty randomly a twitch here a twitch there then nothing for a while. My right hand is getting pretty bad at night though - it cramps up something terrible and I see now a glimpse of what atrophy must be like.

My tongue is the other thing - its started to turn all smooth and I see that its actually losing a layer of fat as seems to have happened in my hands over the past week or two. I can see all the bones from my fingers and in my wrist. Doesnt get any better no matter how much I eat. (alot!)

Drinking water really helps though - loads of water and I take a vitamin supplement about three times a day and I think that might be whats cutting down the twitching.

Seems odd though that some parts of my body are getting worse without a ton of twitching - like my thumb on my right hand. No twitches but still progressively worse. Whereas other areas - like my right foot I can definately tie the worsening of to the twitching that its been getting.

Weird.
 

tomjstones

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24 yearold guy again...

Hi folks,

Right no one is posting replies anymore so either Ive over stepped the mark or Im just too persistent with my conviction that I have ALS...

Is it normal for things to progress this quickly though? Ok stupid question - everyone progresses differently but I am losing the covering on my tongue and at the same time I have fascics throughout. Cramping and atrophy is beginning in my right hand and right foot. My right leg in general is weaker now and my back muscles are being recruited to help with alot of the walking - which let me tell you they arent too keen on! This has come out of (almost out of) nowhere over the past four weeks since I took a knock whilst surfing in France.

Can I ask what rate of progression am I looking at? If I have bulbar and lower symtpoms at once progressing from what was just mild weakness in my right knee until 5/6 weeks ago (combined with weight loss and very slight fascics but everywhere...)

To be honest I was about to get engaged to the most beautiful lass I have ever met and start a new job in the Netherlands. I dont know whether I could put her through this... I am scared but more of the symptoms than of the big bad "d" word... Im just goin down hill faster than I imagined.
 

rose

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I don't know why you're convinced you have ALS, if you don't have the symptoms. The tongue coating thing could be B-12 (?) ... don't know if you've had that level tested in your blood. Go back and read what Wright, BethU, AL, and others wrote to you. It isn't like as if you keep asking, that it will change what your symptoms do point to either.


Increased nervousness will make benign twitching worse. I don't know if it affects pathological twitching or not.

It sounds like you've got something wrong with you, but not ALS.


Don't let the girl get away over this. Focus on bringing the positive into your life, rather than looking for most abysmal.

My advice is to trust your doctors, and what's more go to doctors rather than researching online. And when you do go, don't use technical terms such as faciculations and atrophy,, because the docs are going to know right away that you're googling everything. Use regular everyday person language to describe what's wrong. i.e. "My hands have changed in appearance" not "I have atrophy" and "I keep twitching" not "I have faciculations"

good luck to you, I hope she says yes! (but only if you're willing to move on with your life and drop the ALS obsession, life is too short. ):)
 

CB1977

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Tomjstones- Read my past posts. They go back to August. I think there is something up. Call me crazy ....but I think that there is something going around. I don’t think we have ALS but something similar and hopefully treatable. I have found 5 people on this site in the last 2 weeks that are my age, that work out, that are in shape and healthy, that are coming down with these symptoms. Something that I have noticed is that these symptoms seem to be progressing fast even for ALS. Its like one day your hands are fine then 2 weeks later they are not. One day your tongue is fine and then 2 weeks later not. We need to get together and find the commonality. We all work out...did we all take a supplement...maybe a protein shake...the FDA doesnt regulate that stuff and anything could be in it. What about energy drinks, I read that 5 hour energy has amino acids in it that cross the blood brain barrier and that those are actually the active ingredient. Maybe we are mixing thisngs that are reacting in a negative way, like supplements with energy drinks? I am not saying that these cause ALS, I am saying that maybe these are causing symptoms that are like ALS (hopefully) and that we will all be OK.

CB in Ohio
 

L4dybugg

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I agree with Rose
Don't let the beautiful lass get away ;-)
 

BethU

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Hi, Tomistones ... if this "came out of nowhere after you got a knock while surfing" ... it sounds to me like you have identified the source of these symptoms. What happened surfing ... were you bonked on the head? Did you lose consciousness? What kind of injury did you sustain?

ALS does not appear anything like what you are describing.

Also: When my (first) husband proposed to me, I said yes, and promptly fainted, and spent the next three days in the hospital. Nobody ever figured out what was wrong, but I know now it was my subconscious telling me that that had been the wrong answer. :)

You're contemplating BIG changes in your life ...HUGE ... moving to another country, new job, marriage. That's a lot of pressure. Plus an injury four weeks ago.

Please make sure that whatever injury you sustained has been thoroughly examined and diagnosed. If you and your beautiful lass are in love, she'll be with you in sickness and in health, so don't worry about that. And congratulations and good luck on your new job!
 

tomjstones

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Hi Guys

Thanks for the messages and I think I can get myself into the frame of mind for popping the question.

Its weird ços today Ive woken up with a feeling of gettin out of a high grade fever. My head feels so weightless and my body seems to have sweated the night away.

My fasciculations have dropped away just now. Though there are the odd one or two on my left side which makes me think this is going to start there now too. So it goes attack on the right then attack on the left then attack a bitmore on the right and so on...

Admitedly I have just woken up so maybe its normal for fascics to be nonexistent in the mornings? Though I thought they were the biggest symptom of ALS no?

Anyway - right now they dont seem to be a massive issue - its just the weakness in my legs really and the feeling of cramp in my hand. Oh and the fact that my tongue is still only half covered in what I would describe as its normal surface...

This has all been so quick - I mean it was about four days ago I noticed my tongue was a little funny then by last night it felt like I was carrying a wallet in my mouth. Maybe something to do with all those vitamin tablets I was downing...

I think that you guys are absolutely magic - thanks for your support and its really making a difference to two lives here - Ill try to avoid fainting if it comes to the crunch question. ;)
 

rose

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tomjstones

I don't think anyone thought you were wasting their time.... and I'm very glad you felt encouraged by the responses to your questions.

Now, here's the thing. We LOVE getting good news on here. So, we'd like to hear back from you if and when you pop the question.

.... do you surfer guys still say"hang ten? " (I'm old, can you tell LOL) if so, hang ten ~ and I hope you get to the bottom of what's going on with you.

cheers :cool:
 
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