Worried I may have ALS

[carlogio]

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!

[carlogio]

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.

[Jamiet]

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.

[Al]

Is your pulse rate elevated?
AL

[scared of als]

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 dx 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

[carlogio]

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.

[wright]

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.

[carlogio]

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.

[scared of als]

mine stated like the alien thing to in a big circle,,,thats so weared and hasnt left yet...jenny

[scared of als]

i went ti 10 opthomologest they all said same thing you need a nuero-opthemologest he forun the stuff in the eye

[Al]

The speedy pulse makes me think thyroid. My wife had some of your symptoms when her thyroid went out of whack.
AL.

[carlogio]

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.

[carlogio]

I thought it didn't post so wrote it out again. Oops.

[Al]

No problem.
AL.

[carlogio]

Just to ask again as nobody has answered, does noticable atrophy come THEN weakness, or the other way around? And can atrophy be symmetrical?

[Al]

Usually weakness and a lot later atrophy. Symetrical? anybody's guess.
AL.

[wright]

Hey Al, could you define "a lot later"? I had weakness which was followed by atrophy (loss of about an inch on my upper arm) within a month. Is that too soon in your definition of "a lot later"? My arm isn't fasciculating either. Should I already be fasciculating with the atrophy? To make things even more confusing: I started having discomfort and pain (burning and wrenching pain in that arm . . . from the shoulder down to hand) in that arm too. I know pain can be a symptom of ALS, but I thought it was later on due to cramping, spacity, joint problems. As I've said before, all of this started the second week of December. I don't have a clue what is happening to me.

[Al]

I think it was more than a year after noticing fasic's before you could actually see the atrophy. Loss of an inch in a month seems fast for ALS.
AL.

[wright]

Thanks again, Al. We need to keep you around forever. When they find out lithium works (and it's going to work) . . . and you get better . . . don't you dare think you're going to leave this site. We'll just have to change the focus a bit . . . but I think that we're all just too much of a family to go our separate ways.

You said it took almost a year before you saw atrophy . . . but that was after fasics started. Did weakness start at the same time? When did atrophy start in relation to your weakness?

I have another question: I've tried numerous times to access your slide show / video on that Canadian newspapaer site, but I can't find it. Am I just not looking in the right spot. I scanned the entire web page and I didn't see a thing. Any suggestions?

[Al]

I had a quad bypass 2 years before and we thought the weakness was just a slow recovery from the surgery so it's hard to say when the actual weakness from the ALS started.
Go to www.globeandmail.com Use search and type als and firefighting. The article's come up as Smoke, fire and Lou Gehrigs disease. Click on it and about halfway down the page on the left is a red maple leaf with the link for the audio slideshow there.
Atrophy was after long time fasic's.
AL.

[carlogio]

To update, I saw my neuro today. She is putting me forward for an EMG of my tongue next week. She said it might just be my nerves causing the twitching in there. When I try and totally relax, my tongue does calm down a lot, and there is no noticable atrophy in there, and no real weakness and I'm not drooling and my speech is okay. That should settle it. She says my strength is fine and my air way in my throat is clear, but my relflexes are brisk. I'm glad that she is taking me seriously. She told me to try and relax and not to worry, chances are, I'm fine.

Thanks for your help Al. I'll keep you all updated!

[wright]

VERY HAPPY to hear that you got such good news and that you're able to relax a bit. Make sure you give us more good news when it comes.

[scared of als]

Iam so glad to hear you are fine...i have the same damm problems with the floaters are you stil seeing them after the surgery? mine go on the tv and computer screen and there huge. iam also 25 and having a baby next monday guys....yeah ive had a hard pregnancy weekness and twitching and touge uhhh just to much my eyes are so bad jenny

[pmbenb83]

Jenny ~ Good luck next Monday having your baby! When you have a few minutes, post some pics of the newest addition to the forum. :) Hopefully once you have recovered, you will be able to get to the bottom of your other issues.

BTW, a couple of women were having the IVIg treatment when my husband had his, and they were there because of their eyesight. I'm not positive, but I think they said it was MS and once they had their treatment, they were good to go for several weeks/months. Maybe it is something like that, which is treatable.

Wishing you the best!
Pam B in Va

[carlogio]

Thanks Wright!

Jenny, for some reason it seems like my floaters are less since the laser surgery, but I still see them, and they have been "locked in" now I suppose :rolleyes: Something I can live with though. Good luck for next week!

[scared of als]

Thats how mine are...if you go back and read my post it started when i was pregnant with my first child lilyrose....i was lying down and all the sudden this thing started in a circle and then stars then went boom into my eyes people thought i was crazy when i told them this thenn 6 months later i started twitching all over and in touinge im only 24 and they stil say no als but i think they will be concerned when im done having the baby... i hate these stupid things are your floaters really big and when you squint your eyes they get bigger and go on windows and tvs? i never met anyone that had the same problem...so the laser only helped a little? thanks for the good luck....and i will post pics of little Isabella Rose.....Jenny

[carlogio]

I wasn't expecting any change in my floaters with the surgery as it was for an (unexplained) hole in my retina. Yes they are big, small, some are like threads and cobwebs, some are like parasites under a microscope and some are circles, some stay in my vision for longer some rush past. I can see them in front of the TV, the computer, in windows, in the sky a LOT, drifting over any sort of lights (even a candle) and they do not go away! I've had them now since the middle of December and it's not nice to think I'll have them forever. I have heard stories that after a while, your brain gets used to them, and they are less noticable. Here's hoping.

Can you explain your tongue twitching? What does it look like? (I know I shouldn't be on the forums worrying about my symptoms, but just can't seem to shake worrying about my tongue! :???:)

[carlogio]

To update again, my EMG has been scheduled for two weeks time. My tongue is still fasciculating and my limbs are still twitching. I guess all I can now is wait and see what happens.

[Sammantha]

Hi, did you get cluster headaches??? I get tension headaches and jaw pain and i noticed that during a particular bad time with these i developed floaters, then the floaters seemed to connect like a spider web...... I HATE going into bright white rooms with nothing on the walls because i can see them perfectly and there so blunt it is hard to focus......Luckily that is the only time when they are a problem i have read that they are very common, and have nothing to do with ALS... Have your copper and calcium checked if you have not already, also maybe a ct scan of your lymph nodes. Good luck and best wishes

[vmd]

I've had floaters since I was in my late twenties. I have also suffered migraine headaches since my early twenties. I am now in my fifties.

[carlogio]

Well I had my EMG and nerve conduction tests today. The doctor was really kind and tried not to hurt me too much. He said he was looking for changes in the way my motor neurones are wired that could point to ALS.

First he said he wasn't going to test my tongue because I wasn't slurring and I was eating and drinking okay. I trust him. After lots of testing he said he doesn't think it's ALS but I would have to wait and get tested again in 3-6 months to rule out ALS if it is too new to detect. (In a years time it would be completely ruled out.) He said he would have to refer me back to the neurologist to investigate further but he said he didn't expect to see me again which raised my spirits. My nerve conduction tests were normal.

As I left he assured me that he would inform me if he had found something to really worry about. I'm taking it as good news!

[Al]

Sounds like good news to me. PARTY at carlogio's place Saturday. Everybody invited.
AL.

[CindyM]

Party on! Great news!