Worried I have symptoms of ALS. Grandmother also had motor neurone disease. Advice/support please x

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Lucyb

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I have bene anxious about this for a few weeks now so I don’t believe joining this forum has fuelled my anxiety over it, I was already anxious due to my symptoms and them worsening.
 

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you need to stop - everything you keep asking was already answered in the link I sent you. I have to presume you didn't bother to read it which is a shame.

We made that important post because the people here are fighting their own very real battles. You are asking terminally ill people, some of whom use their eyes to operate their computers, and are breathing with machines to read all these very long posts and answer you personally. You must let your doctors work with you as that is their paid job.

Do let us know the EMG results, but until then, please tell your doctor how serious your anxiety is and get help. Being here and writing all those huge posts is not helping you at all. I truly wish you the best, but we can't do a single thing for you.
 

Lucyb

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Hi.
I am reporting back here to say I have had the EMG done this morning, carried out in my right leg in my calf and thigh, my left arm in 3 places, my throat and 3 muscles in my back.
The lady who done it was the same lady who done it in February 2020.

the EMG in all the muscles that were tested was very loud and crackling. Is this normal sound to hear on an EMG?

I asked her if there is anything I should be worried about and she said she cannot tell me and would report back to the neurologist by the end of the week. However I did notice that she said ‘I don’t think you should have this test again’.

what are people’s thoughts on this?
 

Nikki J

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EMGs are loud. There is also a volume button. If it sounded different than before it could simply have been set differently.

it is not uncommon that the examiner is not allowed to give any results even if normal

we can not read the examiner’s mind but my first thought was it was ok and she felt having emgs was feeding your anxiety and they are unnecessary. Now please wait until you hear the results for your doctor
 

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Sounds like the best news, confirm to us but it sure sounds like it will be completely clear :) Post back once you see your doctor and try to do all the best things for your health and mind in the meantime.
 

Lucyb

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Thank you for your response.

I can’t help but think the fact that it’s only 4 days she is reporting back to the neurologist in, means bad news. Good results normally take a while and bad news normally is a short time and 4 days is not very long.

in the muscles that were tested, 4 different sites on my body the noise was very loud and the muscles them self were very crackly. I thought healthy muscles were supposed to make a flat consistent noise.

It was also very painful for her to test my right leg calf muscle too which is the leg that I am having trouble with.

I really don’t know what to take from her comment ‘I don’t think you need to have this test again’. It could mean anything I guess, I don’t know what context she said it in.
 

Lucyb

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When I say it sounded different I mean the actual sound coming from the muscle.
It was a crackly noise in all the muscles tested and jumpy.
 

Bestfriends14

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You don't have ALS and the sound of the machine has nothing to do with if you have ALS or not. What has to do with you not having ALS is your lack of symptoms, your previous clean EMG, and your clean clinical exams. Are you an EMG expert? If not, it's best to leave interpretation to the expert.

Most likely the reason the examiner is saying you do not need another EMG is because you'll be wasting both yours and the examiner's time, as well as taking a much needed spot from someone who does need an EMG. Until you hear back from your doctor, go outside, take a walk, and breathe deeply. This site appears to be fanning the flames of anxiety.

Stay safe.
 

Lucyb

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The fact I have an extremely tight feeling in my throat and lack of feeling. Discomfort and pain and spasming in my right calf, both legs appear to be very thin (even my thighs), twitching in my right calf also which is constant. Leads me to believe I do have symptoms of ALS.

The EMG showed very high signalling on the machine and it was very loud and crackling.

the only hope I have is by her saying ‘I don’t think you should have this test again’ is because she didn’t see anything wrong, but who knows. I’m very worried. The fact she also said results would be back to the neurologist by the end of the week doesn’t seem good either, good results take a a long time and bad results don’t take long ag all, 4 days is not long.
 

Nikki J

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I am turning off this thread until Saturday. This speculating isn’t helping you
 

Lucyb

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I don’t have results as of yet.
The neurophysiologist said results would be back to the neurologist by the end of the week, I had the EMG done on Monday, so I assume she meant yesterday the results would be back. May I add I also have creatine kinese blood test on 12th June and haven’t heard back from the neurologist about those results yet either.

im so very anxious and very scared for the results that I didn’t ring the neurologist department because I am scared to hear there’s something wrong.

I keep playing in my head the line the lady said to me ‘I don’t think you should have this test again’, in hope that everything was normal. If there was something not normal I would need the EMG again, is the correct?
if there was anything seen, is it likely the neurophysiologist would have marked it as urgent for the neurologist to call me yesterday?

my right foot and leg doesn’t work properly at all, my right foot is completely not working correctly, it feels heavy, stiff and like it’s not moving correctly when I walk. It also tingles constantly too and twitching. The same for my right leg, with constant twitching in the calf, the calf muscle is extremely soft too. My thighs have become extremely thin too.

when I stand on my legs they feel very heavy and shaky.

my throat is still the same with tightness and I can’t feel myself swallowing. It feels blocked with mucus too. My tongue also feels swollen and in so much discomfort.
I also become very out of breathe without doing much at all, like walking up the stairs.

Any comments would be much appreciated x
 

Nikki J

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Yes I think you would have heard. Bad news travels fast. I still think the tester was saying that you shouldn’t have another emg because she did not find anything. Please do not post again until you have results to report. Sign off the forum until then
 

Lucyb

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I mean she said she was reporting back to the neurologist within 4 days of the test; that’s quick for reporting to be turned around isn’t it? But I haven’t heard nothing as of yet.

I am sorry I’m posting here but I’m very worried about my symptoms and feeling poorly. I’m only 26 and with my grandmother and great grandmother having dementia (both now passed) I am worried I may have MND.
 

Nikki J

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No it isn’t. The sign at my neurologist says 3-5 days as normal to expect results. Honestly they know instantly

we can’t reassure you. I am closing this thread. Only start a new one with the emg results. If you have a specific question about the results get a copy and post it with your name removed
 

Lucyb

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Can I ask, how long does it generally take to receive EMG results? I am UK based. I had an EMG done on the 15th June and I haven’t received a call or letter with results.
If results are not good news, would I generally hear from the neurologist soon after the test?
Given it’s been 10 days, is that a good sign things are considered normal?
I would be greatly appreciative of any response from anyone.

thank you.
 
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