Update on symptoms

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tini

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Joined
Nov 21, 2020
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Learn about ALS
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00/0000
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SK
Hello,

I just want to update my symptoms.
Since December 2020 I have problems with my tongue. It started to change in appearance and in size. It’s progessing SLOWLY. After 1,5 year since my problems with tongue started I have now atrophy on it and some twitching ( not constant - but now almost daily) mostly in 2 same spots on my tongue. These twitching look like small spasms - they are mostly on 1 same place / sometimes on another one same place. I can induce these twitches by pressing my tongue harder to the side in the mouth.

I can speak clear. I don’t have slurred speach.

Another symptom is whole body twitching ( legs, arms, face ……) - not constant - not in the same place. One twitch here another there. Not always.

My neurologist ordered me for a consultation to neuromuscular doctor - to give their opinion from what I can have this problems and maybe to do some other tests.

Can I ask you please about your opinion - could it be something else causing tongue atrophy and spasm/twitching than Als? Are there some other diagnoses that can do this except MND?

Last EMG I had was in May 2021 (whole body including tongue) - which was clean.
Anothet was in November 2021 (only from tongue) which was clean again.

Thank you
 
Hello-

I am sorry you find yourself back here again. Hopefully the neuromuscular specialist can provide you more answers. You have had at least 2 clean EMGs and been cleared of ALS by the neurologist, so the folk here can not really provide you more guidance than to listen to your doctors and keep working with them to try to track down the source of your concerns.

You ask what might cause your issues if it's not ALS- the Read Before Posting link has a list which contains some of the conditions. This forum really can't help you with diagnosis, that is for the doctors.

Prev threads here:




Please wait until after your appointment with the specialist and let us know how it goes. Any other posting is speculation and does not help in any way. This subforum exists to provide basic information only and anything more is beyond its scope. If you are struggling with anxiety about your health while you wait for your appointment, there are forums that exist for that that can definitely provide support for that. No More Panic is an excellent one.
 
As advised, it is best to wait and see this specialist, then let us know the outcome.
We can't examine you, but all indications sure point away from ALS which is great.
 
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