Old 01-25-2017, 09:05 PM #1 (permalink)
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Default Does this sound like ALS?

Hi, I apologize in advance for how long this is-just want to make sure I don't miss anything.

I have had breathing issues for a few months now but thought nothing of it until later. It basically feels like my breathing muscles aren't strong enough and I am not getting enough air. This is constant and is at it's worst when I am lying down and when I wake up in the morning. About two months ago I started getting chest cramps and cramps in my right arm as well as soreness in my tricep. That week, as I was putting on socks I fell over because I suddenly could not balance on one foot. I haven't been able to balance since no matter how hard I try. I started having both painful and painless cramps in that foot. A few days later this started in the other foot and I could no longer balance on that one either. Gradually, my lower legs (one by one) and then my thighs started to feel tired after even using them a little and I started (and still do) get spasms anywhere in my legs. A few irregular spasms per minute, sometimes more, sometimes in a row. Then the heaviness, cramps and spasms started in my arms. This week I can't even type or lift up a fork to my mouth without it feeling extremely heavy and my arms feeling incredibly sore. I know that pain usually isn't associated with ALS however the soreness goes away if I completely relax and don't move or tense the muscle. This has also started to happen with my neck, shoulders and upper back.
I can't stand without clenching my butt muscles or I tip forward. I had 2 glasses of wine the other night and I was tripping all over. It was scary. 2 glasses usually does nothing for me.

I know these aren't the typical symptoms however the weakness, tripping, heaviness breathing with my chest and constant muscle twitching are bothering me. Dr. has said he has given me all the blood tests he can think of (a lot) including lyme's disease and they have all come back fine. Cardiologist said heart was fine. Neurologist said I don't have ALS before even examining me because he said I'm too young (20f). But he saw that my reflexes were brisk and said he can do an EMG if I want.

Has anyone experienced similar symptoms? Thank you!
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Old 01-25-2017, 10:31 PM #2 (permalink)
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Default Re: Does this sound like ALS?

Neuro offered an EMG...

Might be good to have it done for your peace of mind.
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Old 01-26-2017, 10:50 AM #3 (permalink)
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Default Re: Does this sound like ALS?

Thanks, I am going to in 2 weeks. Heard it is very painful.
Does this sound like anyone's symptoms or like it could be ALS? Honestly?
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Old 01-26-2017, 12:01 PM #4 (permalink)
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Default Re: Does this sound like ALS?

I didn't find the EMG painful at all, I was warned to make sure I was very warm before the test as it relaxes the muscles which helps. Your symptoms are very widespread in a very short time which wasn't at all my experience, but as you are worried have the test it will ease your mind, EMG's are used to identify other conditions besides als and you may find it shows up something that it totally benign or treatable.

Good luck

Wendy
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Old 02-14-2017, 10:02 AM #5 (permalink)
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Default Re: Does this sound like ALS?

Thank you Wendy!

I finally got the results from my EMG. It was an EMG of my left arm and left leg-however it only took 20 minutes. I thought it was supposed to take longer? It was done by my neurologist. He said he couldn't find anything straight after the EMG and that it looked normal. My results for the NCV part says everything is normal except slowing in the ulnar nerve across the elbow.
The EMG part has columns that say
Muscle
At Rest
Motor Units
Recruitment
Under muscle it has the name of the ten muscles he tested (five in each limb)
Under At Rest it says 0 for all ten muscles
Under Motor Units it says N (which I assume is normal)
Under Recruitment it says N

I've heard there is a big difference between a normal and a clean EMG. How do I know if mine is clean? Other EMG results that I've seen from people on here seem to have a lot more detail and look nothing like the chart I got. Also, even though my muscles twitch pretty constantly these days, they did not twitch for the few seconds that the needle was in each of them. Does that matter? Also it is getting very difficult for me to type or even use my phone. A few weeks ago I double clicked the home button on my iphone like I do often and instead of double clicking my thumb just stayed pressed on the button. This has been happening ever since and now I can't even double click fast enough on my phone! Also, about a week ago my tongue suddenly started feeliing tired and achy while eating food. This has continued and now happens when I talk fast as well. People have also noticed that my voice is hoarse, and my throat aches if I talk loudly.

Has anyone else experienced this? So far, every week a new part of my body has started to get weak. Nothing has gotten better, just worse. (my left foot, then right foot, then my right leg, then left leg, then right arm, then left arm, then left hand, then right hand, and now tongue also). Breathing and voice issues started a few months ago before any other weakness. It has been just over two months since my first foot lost its balance.

I am thinking of going to an ALS clinic just to get a second opinion? Neurologist says there's nothing more he can do b/c we've done all the tests. Sorry if this was too long and confusing! Any opinions would be really appreciated!
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Old 02-14-2017, 11:19 AM #6 (permalink)
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Default Re: Does this sound like ALS?

No an emg of 2 limbs does not usually take longer. I have had several different doctors expert in EMGs do them for research.

Clean is not a technical term but normal is as clean as it gets. The more abnormal the emg the more things you see on the reports. Those 0s and Ns are great. And no it does not matter that you did not twitch.

If you have rapidly spreading weakness it will obvious to a doctor so follow up or seek another opinion if you must but your emg is the one everyone here wished flr
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Old 03-02-2017, 03:44 PM #7 (permalink)
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Default Re: Does this sound like ALS?

I don't know what to do at this point. I have tried not to think about my symptoms at all and just go about my life. I am the last thing from a hypochondriac. Mother had to force me to go to the doctor for an unrelated issue last year. I really haven't been to the doctor at all except for vaccinations as a kid and annual check ups and a late term emergency pregnancy termination b/c baby was unable to survive. Actually that wasin november if that makes any difference.
But the 'weakness' is getting in the way of my day to day life. I am in college and typing essays/using the keyboard is getting too tiring for me. Driving is becoming tiring as well. Not to the point where I can't do it, but it feels like I've had a really tough work out. I can't seem to push the pedal with just my foot, so I have to use my upper thigh and butt muscles to move my whole leg. And the top of my feet feel like they are lifting something very heavy. When I use my phone (and I've always just used my thumb on my phone b/c I find that easier idk) but I can't press the home button anymore without my thumb just staying pressed on there. The part of my thumb above my knuckle trembles like crazy if I try to type.
My muscles have also been twitching a lot more (especially in my arms and legs) but I think the most irritating thing is that it is very uncomfortable for me to lie down because I feel very out of breath when I do. My boyfriend was worried the other morningbecause he said my lips had no color and I wasn't waking up. I don't know if that's related or not tbh but honestly the breathing problems while laying down are the most inconvenient.
I am sorry if my post is coming across as insensitive or silly-I understand that all of your symptoms are a lot worse and mine may seem trivial.
I just don't know what to do.
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Old 03-02-2017, 04:18 PM #8 (permalink)
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Default Re: Does this sound like ALS?

There are some adult-onset myopathies, including some of the muscular dystrophy subtypes, that present with a normal EMG. I would seek an evaluation at an MDA-certified clinic, of which there should be one near you. This all seems like a primary problem with muscles (myopathy), not nerves.

Best,
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Old 03-22-2017, 04:18 PM #9 (permalink)
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Default Re: Does this sound like ALS?

I have a question: If I have-or anyone else has- very frequent muscle twitching (like ripples under my skin) all over my body (especially arms and legs) but I don't twitch in that exact muscle for the exact few seconds that the needles is in there-then how can my spasms/twitches be tested to see if they are concerning? If the needle is in that muscle while it isn't twitching at all.
Like what if I have spasms in my thigh and none in my forearm for the few seconds that my forearm is being tested, and vice versa?
I am always confused about that because I have frequent spasms every few seconds, just not while those muscles were tested in the emg. Does that make sense?
I am sorry if that is a very stupid question but if someone could please explain that to me?

Also, I can't even make any small single movement anymore with any part of my arms now without that part of my arm getting exhausted. Ever. It doesn't matter when it is. And I am struggling to hold things and dropping them. Legs are almost as bad as arms now but I can still walk on level ground with small steps, slowly.
I went for a follow up to my doctor but he says that there is nothing else he can do since my one EMG is clean.
I want to get a pulmonary test, get evaluated at an MDA certified, and also see a neuromuscular specialist or even an ALS specialist-but I have no idea how to go about it because the doctor won't refer me because I had a normal emg and routine blood tests.
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Old 03-22-2017, 04:25 PM #10 (permalink)
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Default Re: Does this sound like ALS?

Rest assured, a muscle does not have to be twitching for the EMG to have spotted a nerve problem. Nerves do not heal in between twitches. If they are damaged, they are damaged, just like an X-ray would spot a fracture even if you weren't in pain at that moment.

If you want pulmonary function testing for your peace of mind, any PCP or pulmonologist can order that.
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