Old 01-28-2008, 06:18 AM #1 (permalink)
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Default Worried I may have ALS

Hi everyone, I have been going through a very hard time since the middle of December and was wondering if anyone could help -- could my symptoms be ALS? I'ma 22 year old male and previously in good health.

I'll put all my symptoms down but star the ones that I think may point to ALS. I'm terrified.

*Weight loss (I've lost a stone since the middle of December, I'm thin anyway and I've noticed MUSCLE WASTING on my hands in between fingers and under my wrist and also my feet look very boney, the muscles on my legs are now a lot tighter and smaller than before and they TWITCH a bit.
*The little fingers on both hands have reduced movement and if I hold them a certain way they will TWITCH. It feels like I've lost dexterity in both little fingers. This is symmetrical on both hands and it's harder to do small fine movements using my little fingers.
*For a while in december it felt like I was FLOATING around because the muscles in my legs were so tight. I DO NOT have cramps though.
*I've developed a fine TREMOR in my hands and jaw (if I close my teeth together they lightly chatter), and if I put weight on my arms or legs they SHAKE too but not excessively. If I exercise I SHAKE too.
*I can move my arms and legs very fast and I seem to be in overdrive, my reflexes are quite brisk.
-Hands tingling and loss of sensation (not constant and feeling returned after a month)
-Tinnitus (this is constant and is a high pitched ring)
-Light sensitivity, after images, seeing halos and suddenly lots of floaters (Yes I've had my eyes checked twice and they can't find anything)
-Bones cracking when walking, loud noises
-The speed of tapping my feet feels slower etc
-Motion perception disturbances (IE feels strange watching flowing water on a TV, almost unsettling, I was on a train the other day, when we stopped, it felt like we were still moving fast and it scared me)
-A strange symmetrical rash on tops of feet and toes, my doctor first thought it looked a bit like a vasculitis and it has not gone away.

I've seen a neurologist and I was given an MRI of the head and spine and it came back all clear. Also I don't have any antibodies that would point to an autoimmune problem. They also tested for ANCA antibodies but it returned negative so doubtful I have vasculitis. I have no thryoid antibodies either even though I have an HIGH T4 count but not a high TSH count (Thyroid stimulating hormone) which doesn't make sense so the doctor wants me to repeat the test. I also had a bone profile test and a DNA test and this all came back normal.

Basically the muscle wasting and tightness, the twitches, transient weakness in hands. The fact my immune system doesn't seem inflamed from the blood work is making me worried that I am developing ALS, even though the chances are slim because of my age and the speed of my symptoms.

Shall I go back and request an EMG or something else? If it carries on like this I'll be nothing but bones in a month!
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Old 01-28-2008, 06:21 AM #2 (permalink)
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Sorry, just wanted to add that the MRI was of my brain and NECK, not spine (my mistake) and my brain MRI was without constrast. Thanks.
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Old 01-28-2008, 11:49 AM #3 (permalink)
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Have you been checked for lyme, esp. with the floaters and vision issues?

I would def check that. It is possible, esp since this came on so quickly.
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Old 01-28-2008, 04:04 PM #4 (permalink)
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Is your pulse rate elevated?
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Old 01-28-2008, 04:57 PM #5 (permalink)
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Iam 25 and am experiencing same issues as you especially with the floaters....mine are constant and go on the tv..no onw has been able to diagnosed me but i have twitching everywhere and in tounge i know i have als....tell me about your floaters are they constant? id love to talk to you we have the same symptoms jenny
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Old 01-28-2008, 06:08 PM #6 (permalink)
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Thanks for the replies.

I don't think I have lyme. I don't live in an area where it tends to happen (near London in the UK) and the doctors certainly haven't mentioned it.

I may seem like a hypochondriac but all my symptoms are real and I wish I could put it all down to anxiety.

Al, my pulse is quite high, and considering I'm on 120-160mg of propranolol a day, it really shouldn't be. The doctor isn't sure why that is. I was prescribed anti-depressants today, even though I don't think I need them. I'm completely anxious and stressed and depressed about my symptoms, and day to day life at the moment is very hard, especially working, although I'm trying to stay positive. Not sure about taking the pills.

Hi Jenny. Yes I see the floaters all the time, even in dimmed lights, if there's a light, or the TV, or even a candle, I can still see the floaters. Very stressful. My tongue doesn't twitch inside of my mouth when it's relaxed, but if I stick it out it will. Not sure if that's normal. My legs have been stretching themselves a lot today it seems, and even walking seemed like a bit of an effort, especially down stairs. Let me know how you are, and the rest of your symptoms, maybe we can help each other a bit.

Another thing I've now noticed, and what scares me terribly, is that I think I have what's called clonus on both my feet and also my hands. I first noticed that I couldn't tap a beat as well on both my feet... if I tap my foot for a bit, then flex it towards my knee, it will shake. Also, if I hold something heavy in my hands, it will shake a lot too. Not sure if this is a postural tremor or something

Also, I'm saying the wrong words for things, and sometimes wrong way round, and typing is hard even though I work as an IT analyst and I can usually type 80WPM, at the moment I make so many mistakes and frequently type words out in the wrong order.

I have an appointment with another opthamologist I'm seeing a neurologist again on Friday, and I'm sure to ask for another full physical. I'm thinking about requesting another MRI of my brain, this time with constrast, and also my spine. Would that be a good idea? Was also thinking of asking for an EMG and evoked potential test. Maybe even a lumbar puncture.

Does muscle atrophy happen symmetrically? How fast does it happen? Does spasticity come first then atrophy, then loss of strength? Bear in mind this only started happening in the middle of December.
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Old 01-28-2008, 06:30 PM #7 (permalink)
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Hello Carlogio

I'm not sure what you have, but it sure doesn't sound like it could be ALS to me. The onset of symptoms is so dramatic and fast. Certainly you are manifesting some of the symptoms of ALS, but you are also showing symptoms that are not consistent with ALS at all. Unless you were completely unaware of your body prior to December, I can't see how all of your "ALS" symptoms could have happened so quickly. If I were a betting man, I would say 99% sure it isn't ALS. Certainly what you have needs to be addressed, though. I'm sure the physicians will get to the bottom of it sooner than later.
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Old 01-28-2008, 06:39 PM #8 (permalink)
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Hi wright, thanks for your reply. No, I wasn't unaware of my body! Your post has calmed me down a little.

It all started when saw a bright flash of light in a cloud while outside in December (I thought it was an alien for a second then realised that was insane) then I saw many many floaters and thought I WAS going insane, along with little sparks that I now know are blood vessels in my retina. I then came down with an almighty malaise that lasted around a week, then I had a virus and sore throat and in that week all the symptoms came and have yet to disappear...

I agree that there is a lot going on and short of having a stroke that hasn't shown up on MRI yet I can't think of much else to put it down to, but worrying isn't helping I suppose.
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Old 01-28-2008, 07:20 PM #9 (permalink)
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mine stated like the alien thing to in a big circle,,,thats so weared and hasnt left yet...jenny
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Old 01-28-2008, 07:21 PM #10 (permalink)
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i went ti 10 opthomologest they all said same thing you need a nuero-opthemologest he forun the stuff in the eye
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Old 01-29-2008, 03:36 PM #11 (permalink)
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The speedy pulse makes me think thyroid. My wife had some of your symptoms when her thyroid went out of whack.
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Old 01-30-2008, 11:14 AM #12 (permalink)
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Hi again. Boy have I had a scary day.

I had my eyes checked again this morning, and the consultant found a hole in my retina in my right (and my only good) eye. I had to have emergency laser eye surgery but he said it only explains the floaters, not the afterimages and light sensitivity.

Also, my tongue is definitely fasciculating (just like an example video I saw), and this morning it hurt to swallow. I'm still shaking.

I don't understand how this can be happening. I'm only 22, this can't be right. I'm seeing my neurologist again on Friday, I will bring everything up then.

If anybody can offer any advice or support I really need it, I don't want to tell my family I'm worried it's ALS and have nobody to discuss this with. Thanks.
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Old 01-30-2008, 01:42 PM #13 (permalink)
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I thought it didn't post so wrote it out again. Oops.
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Old 01-30-2008, 02:00 PM #14 (permalink)
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No problem.
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Old 01-31-2008, 12:04 PM #15 (permalink)
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Just to ask again as nobody has answered, does noticable atrophy come THEN weakness, or the other way around? And can atrophy be symmetrical?
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