Old 05-26-2016, 09:47 AM #1 (permalink)
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Default New here! Atrophy hand, no weaknes, twitches all over.

Hi! I must start to tell you all that my english is terrible!! I understand everything I read but I'm so bad at writing and speak my self. I hope you all will understand what I'm writing.

I am 37, female that for one year ago had my second child. After the birth i noticed I had some tingling feeling in the skin of my left leg and where to the doctor for a check up. I also felt very stiff in my feet when I woke up in the mornings and had problems just go to the bathroom. That stiff feeling was getting better after a few steps.. The doctor send me to a orthopedic and he was sending me to MRI for check of my back. He found som brisk reflexes in my left knee. The MRI came back clean and an other orthopedic was checkin my reflexes again and he said it was normal.

He was sending me to an neurologist so they could rule out MS he said just because of the feeling in my skin.

The time went on and that strange feeling disappeard. But for about 4-5 month ago the twitching started. First in my leg. It feelt like a bubbling sensation. It then start spreading to my tigh. And it was then i saw the fasciculation for the first time. Then i started to spread all over my body. I feel it constantly!! It jumps around from my feet, leg, butt, back, fingers, arms...everywere. The neurologist couldn't say why but send me to an MRI of the brain and a neurofysiologi-test...eng? They all come back normal. Next week they sending me for an EMG.

I was with the neurologist today and she said that the EMG is the last thing they will do. Then Iam clear. But when I was showed my hands today and told her I was worried about the left hand was thinner than the right she agreed and said "yes your hands look like someone that can have ALS but you are also very thin all of you so I can't tell."...And yes twitches are a sign for ALS but don't worry . Just wait for the EMG.

o my god!! Im so freaking out and feel terrible. Just crying all day long after this meeting. Can i have atrophy in my hands without feeling weak!?

I don't know what I want with this. I have read on this forum for some time and I don't want to make any of you all feel bad because I know you all struggling!! Im just in panic! How do you know it atrophy and not just how you normally look? She told me "I'm not gonna lie to you, it looks atrophy" ...Maybe i could link a picture later on...
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Old 05-26-2016, 10:34 AM #2 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

I forgott to say that they also took some bloodtest to look for some muscle enzyme (?) CK? and that was ok. The neurologist told med that just that bloodtest could in ALS shows some muscle enzyme that could cause muscle atrophy/weakness...

So what i am worried about is the twitching all over and the possibly atrophy in my hands. All the other test came back ok...Is it enough to worry about ALS?
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Old 05-26-2016, 01:25 PM #3 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Twitches mean absolutely nothing. Everyone twitches, some more than others.
'Strange feelings', especially those that disappear, have nothing to do with ALS. ALS impacts motor neurons not sensory ones.
Atrophy follows weakness. My hands look like skin stretched over a skeleton.

Doesn't sound like ALS to me. The EMG should clinch it.
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Old 05-26-2016, 01:54 PM #4 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Thank you so much for answering me! I also know that sensory feelings like I had is not in als. So in the beginning I was not even think of als as an option. But I felt I needed to mention that anyway now when this fasciculation is all over. My hands look like a skeleton whit skin also... But I also is really thin! My weight is just 52 kilograms to 167cm...I'm just so scared after what the doctor said that my hands looks like someone with als.

I try to attach two pictures on my hand...
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Old 05-26-2016, 02:01 PM #5 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

This is the right "normal" hand...( I hope the picture came with the message"
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Old 05-27-2016, 03:09 AM #6 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Yesterday i was looking at old pictures at my self and in those pictures I also have very stringy hands (i don't know if thats the wright word)...Those pictures were taken for several years ago back in 2011. I can't tell if they look exactly like this but i can see they are very thin.

can ALS starts with atrophy like this and no weakness?
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Old 05-27-2016, 04:48 AM #7 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Really you just have to wait for the EMG.

I can't see atrophy, just thin hands, and you say you always had thin hands. No ALS does not start with atrophy and no weakness.

Don't waste the time waiting by posting here, we can't say anything really. Go do some things you love and then get your EMG. Let us know once you have test results. All the best.
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Old 06-01-2016, 04:30 AM #8 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Thank you for answering me! I know I have to wait for the emg. It's on Friday. I'm just so scared and can't think on anything else right now. Keep starring at my hands and only see atrophy at my left hands..and the scary twitching and different part of the body that jerks when I'm resting.

I'm not feeling any weakness in my hand but the possible atrophy just freakin me out.

I can't sleep and hardly eat and just have extreme anxiety everyday. My daughters 1 birthday is soon and all I think about is als...

Sorry to bother you with this. Thank you for your support and answers! You really are helpful for many people.
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Old 06-01-2016, 09:20 AM #9 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

I just must clear something out. When I wrote twitching I mean fasciculations.. Is that the same thing? My doctor said I have fasciculations.. I see the twitching under the skin.
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Old 06-01-2016, 09:57 AM #10 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

We generally say twitching here. All fasciculations are twitches. Not all types of twitching are fasciculations. And not all fasciculations are ALS, in fact most are benign. Good luck with the EMG. Please let us know the results
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Old 06-01-2016, 10:10 AM #11 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Thank you Nikkij!

Can it be something else than als? Widespread twitches and atrophy? I'm so scared
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Old 06-01-2016, 10:32 AM #12 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Certainly it can be something else. I know it is hard but until they do the tests you have to wait. Twitches can be many things mostly benign. Atrophy also has many causes and it sounds like the doctor was not sure it was true atrophy. You said you were very thin and it is normal not to be symmetrical. My right hand has what they initially thought was atrophy but it is not weak,has no EMG abnormalities and remains unchanged in 2 years. It is normal for me and no one worries about it any more.
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Old 06-01-2016, 11:07 AM #13 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

So if i understand right, i must feel/have weakness for it to be true atrophy? I have no weakness..so far. The neuro checked that the first time i where there...
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Old 06-01-2016, 11:16 AM #14 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Generally weakness precedes atrophy in ALS so no weakness is very encouraging. The point I was attempting to make is that in my case an ALS expert looked at my hand and was concerned by its appearance ( my problem was and is in my legs) but even after 2 years of observation and testing it shows no sign of ALS ( no weakness and normal EMG) and they decided it is not atrophy but merely the normal appearance of that hand.
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Old 06-03-2016, 09:20 AM #15 (permalink)
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Default Re: New here! Atrophy hand, no weaknes, twitches all over.

Some update after the emg today! The doctor put needles in my "atrophied" hand, one in the arm, leg and back. All came back fine! Great news! But he couldn't tell me why I'm twitches so much. But a clean emg means no als?? Even if he just tested the left side?
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