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donj01

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In december I started feeling pain in my shoulder, but as I'm not someone who sees the doctor frequently I just kept on going. After a car accident I felt the pain and saw some fascics every now and then. During the Christmas Holiday I noticed that something was going on in my right foot. it felt as there were aspirines working in on the bottom of it... So I went to see Dr Google, and you guessed I came up on ALS... Since then my life and mind have been hell... My GP loughs at the idea but agreed to send me to neurologist. He started making jokes and at last took an EMG, without 'really worrysome' signs, but have to come back within six months. On the EMG a certain F wave from EDB doesn't come back. When looking at my feet another neurologist said EDB isn't there anymore, and now I see that ADM is also disappearing... I still can stand on my toes, walk like that and also on my heels. Can also stand on one leg, but fascics are getting worse....
Anyone knows this kind of situation ?
Thanks in advance,
Don
 
I am not completely understanding your post. Are you saying you have atrophy? But f waves are a finding on the nerve conduction test ( where you get shocks to the skin) not the emg ( needle portion). If your nerve conduction test was abnormal that points to a problem other than ALS
 
Hi again,
Yes there is a kind of atrophy of two small muscles in my right foot.
If I got it right the test with the needles was ok. It was the ncv test where they found out that a f wave was not seen.
In the meantime I 've seen that my thumb (right hand) is also changing, little muscle disappearing ( looks like if you have pushed a long time with your finger on your leg, small impression)
On 5th of April have appointment with very good neurologist specialised in ALS. I hope he will do necessary tests to give a correct diagnosis.(hopefully a good one)
I have another question : do fascics ever stop with als patients. I have seen that when I drink some alcohol fasics stop or are more calm..
Thanks in advance for possible reactions,
Don
 
Fascics are different in everybody. Some people don't have them. Some people have them a lot.

For my wife, she would have a tiny twitching on a muscle, and then soon, that muscle would become paralyzed, limp, and useless. Then there would be a twitching on the next muscle, and so on.

What does "aspirines" mean?
 
First of all thanks for your kind answer.
Asprine : kind of bubbling effect when you drop aspirine in water ( or Alka Selzer pill dissolves when reacting with water)
 
If I understand it right the muscle doesn't disappear and leave kind of crater ?
That's what I experience...
Don
 
With my wife, her atrophy was not like that at all.

First, her muscle become very weak, then quickly totally paralyzed, limp and useless. After some weeks or months, the unused muscle became flattened out to be rather thin.
 
Hey Don,
If the fascics seem to get better with a little booze, you might be having an anxiety problem.
Your description of atrophy is not consistent with ALS. See Mike's post.
 
Hello Kim,
thanks for your remarks.
As far as the anxiety is concerned, I have to say that while waiting for a meeting with University professor,neurologist specialised in ALS, I decided to see psychiatrist ,who at the same time is neurologist ,in order for me to cope with anxiety and with the idea that maybe I 'm seriously ill.

On the other hand he told me that the little wells in my foot and now hand , are typical for muscle atrophy related to NMD diseases ( and thus for ALS as well).

This morning , for the first time in a month I stood on the balance, i've lost 7 Kg.
I've read that weight loss is typical , but is it typical because people eat less, as they experience troubles swallowing or is it because they loose muscle volume?

thanks in advance for your kind replies,

don
 
Don,
In early disease, the latter.
We will continue to hope for a different diagnosis. There are diseases other than NMD that can cause abnormal nerve function and atrophy. And weight loss is not necessarily connected.

Best,
Laurie
 
Hi Laurie,
Thanks for your kind reply.
Could you please explain what does it mean ' to have a clean EMG'. Does it mean you can't have fascics ? Or do some fascics not show om the diagram ?
As I wrote before on the NVC they didnt see an EDB F-wave. Does that mean that EMG is not clean ?
I've been looking a lot in the internet to find out what 'clean' really means, but no explanation found.
Thanks in advance,
Don
 
An abnormal nerve conduction study does not mean your emg was abnormal so if that was all that was found you had a normal ( clean) emg. Dirty emg is not a technical term so means different things to different people. Fasciculations are sometimes seen on emgs but even if they were seen if that was all that was found an emg would be considered essentially normal or clean It is not fasciculations but the company they keep is a saying in the emg world. It means that sometimes fasciculations are found along with things that are worrisome like fibs and psws and it is the fibs and psws that raise red flags

You are saying you had a normal emg and an abnormal ncs. That combination points away from ALS so I would think your doctors will be exploring other explanations. Something is wrong with you but the tests you report say not ALS. Good luck in finding out. You should be looking up abnormal ncs if you must search not abnormal emg which you say you did not have
 
Nikki,
Thanks a lot for your reply. hope you are 100% right :)
Don.
 
Absent F waves are not uncommon, don't necessarily mean anything dire, and as Nikki says are related to the NCS rather than the EMG. As she also pointed out, a "clean" EMG can still have some abnormalities, just like you can have blood work out of range but still be fine.
 
Thanks for your reply.
yesterday evening my stepdaughter was at our place and she pointed to my right hand telling me that it has lost 'muscle volume'. It's the muscle Inside of the thumb that has become much smaller than the right hand one.
So my question : is ALS spreading one sided, before starting at the other side, or is it e.g. first right foot/leg , then left foot/leg and then hips, belly , or is there no normal route and so it attacks where it wants....
I have to say that this waiting in anxiety is really very heavy mentally, and my relation with my girlfriend is really Under pressure as I can't concentrate on anything else..... Hopefully I won't loose her because then I'm all allone... and maybe having to go this 'killing route' alone just makes me paralyzed now already.

Don
 
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