Tongue atrophy

scienceguy

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Hello,

I posted before in this thread: Tongue symptoms

First off, thank you for your patience.

I have had issues with my tongue for about a year now -- they started concurrently with a lymphoma in the neck. I started noticing some mild atrophy in June 2019, but as of last December, no doctor that I showed it to noted anything wrong. I was somewhat reassured, although I did feel like something was wrong.

Over the last month or so, I have noticed an increase in the atrophy on the left half of my tongue -- i.e. the side where the swollen lymph node was. The thing is that my lymphoma was successfully treated. I feel like it is becoming pretty obvious that some of the muscle is shrinking. I do feel that there is a chunk of my tongue that's smaller when I speak, although my speech is not obviously slurred at this point in time.

Last time I saw my GP (last November), she acknowledged that the was some asymmetry in my tongue, but wasn't overly worried about it. Things seem that have worsened, so I am planning to go see her again to show her how things have evolved.

In the meantime, I was hoping you could answer a few questions that I have:

1) I have some atrophy, but no obvious tongue fasciculations or cramps at this point in time. Would that be unusual in bulbar ALS?
2) I noticed the start of this atrophy in June 2019 -- about 9 months ago. Rationally speaking, it is likely that I would have more obvious issues by now if it were bulbar ALS. Is this reasonable?

Cordially,
scienceguy
 

KarenNWendyn

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I still believe you have some chronic nerve damage related to the lymphoma or its treatment. It may or may not be permanent. Hopefully it will level off.

In bulbar ALS, the presenting symptom tends to be slurred speech that others notice. Atrophy usually comes later. Fasciculations are nonspecific, and it really doesn’t matter if they are present or absent. If you had ALS, you likely would have more going on by now.

I don’t see ALS here. I would encourage you to let this go. If seeing a neurologist would be the only way you’ll get peace of mind, then go see one.
 

affected

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Nothing has changed since you last posted and we assured you it was not how ALS presents.
My husband died of bulbar onset ALS, and I support local people living with ALS, so physically speak with them.
You just can't mistake it - and you are not describing it. If it were bulbar ALS you would be seriously disabled or dead by now. Brutal but honest.
Please work with your doctors, we can't do anything here, but I sincerely wish you all the best.
 

scienceguy

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I am getting help from a psychiatrist to cope with the anxiety that this causes, but I believe that at this point, nothing but an appointment with a neurologist will truly put my mind to ease.

Thank you both for providing honest opinions, one more time. It is greatly appreciated.

I wish both of you the best as well.
scienceguy
 
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