Tongue symptoms

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scienceguy

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Hi,

I have been lurking on here for a while and have read many posts and the stickies; hoping that things would resolve spontaneously, but it appears like they are not. I am grateful for any insight you can provide. Admittedly, I have been fearful of ALS for many years, and am aware that I developed an abnormal thought pattern where anything can be explained by ALS in my mind, which is quite outrageous.

Anyhow, I am a 27 year old mixed race (African-Caucasian) male, that has been experiencing odd issues with my tongue for about 6 months. This has developed alongside a lymphoma in my neck, which I am currently undergoing treatment for. I noticed:

- Occasional fasciculation in the same spot (at the tip of the tongue), with a sensation of numbness/tingling (I know, unusual for ALS). I also get them in my arms and legs occasionally.
- Speaking feels slightly more laborious, although someone has yet to point out that my speech is off -- which is good.
- The middle groove of my tongue feels like it has slowly been getting wider with the left side feeling less "meaty".
- I also see some dents on the right side, which concern me.

I brought this up to my PCP who basically ignored my complaint, because she was focusing on the lymphoma which is more urgent. Everything is consistent with BFS, except for what I perceive to be atrophy. My concern is compounded by the fact that I have read in a handful of studies that lymphoma has been occasionally found to co-occur with MND-like diseases, so I guess my questions are as follows:

1) Have you heard/experienced tongue atrophy preceding obvious speech issues?
2) Generally, would you expect 6 months to be enough to reveal something ominous?
3) For those experiencing bulbar symptoms, does the tongue feel any different from normal?

Once again, I'm grateful for any opinions. I promise not to argue or challenge them, as I find that pretty rude. I plan on discussing this with my doctor once I am done treating the lymphoma.

Best,
scienceguy
 
The first thing that strikes me in your post is that you say you’ve been “fearful of ALS for many years”. But your tongue has bothered you for 6 months and it’s not clear if you’ve had other ALS-like symptoms for many years. Someone who has a fear of a disease might be more likely to attribute symptoms to that disease.

Slurred speech that others notice is usually the first symptom for bulbar ALS. It stems from decreased tongue mobility. The tongue doesn’t feel weird or weak, it just doesn’t move as much, and this results in slurred speech. I have slurred speech from ALS and my tongue feels the same as it always has.

Lymphoma can sometimes mimic symptoms of ALS. Lymphoma is one of the conditions to be ruled out when diagnosing ALS. Sometimes lymphoma or its treatment can affect the tongue. This is something you might want to discuss with your oncologist.

Don’t worry about dents and atrophy if there is no weakness or slurred speech that others can hear. Changes in the appearance of the tongue over time is not unusual.

Twitching is common, nonspecific, and meaningless, so forget about it.

Six months of symptoms is plenty of time to reveal something ominous.

So work with your doctors, but I don’t see ALS in your post.
 
Thank you Karen, time for me to go! Feel free to close the thread.

I wish all of you the best.
 
Hi,

I thank you in advance for your patience. My lymphoma has been successfully treated, but I am left with some issues with my tongue. The atrophy in the left side of the middle groove (moving outwards) in my tongue has continued progressing, very slowly -- I plan on showing my PCP, which I am scheduled to meet in a month. It is most visible when I flex it. Hopefully, she will agree to investigate this.

My tumour (swollen lymph node) was in the submandibular area on the left side of my neck -- side of the atrophy. I'm thinking (and hoping) this could have caused a nerve injury to my hypoglossal nerve, although this does not seem to be very common. People haven't commented on my speech yet, although I do feel that a chunk of my tongue is thinner when I speak, if that makes sense. Tongue is still relatively strong at this particular point in time.

The progression in atrophy in spite of having finished treatment (a month ago) is concerning to me. A couple conditions could explain this, but ALS is the one that concerns me the most. I'm wondering the following:

1) Do you believe that a request for an EMG is reasonable?
2) Does tongue atrophy in bulbar ALS typically present bilaterally or unilaterally?
3) Other thoughts?

Thank you in advance,
scienceguy
 
1) I see no reason for an EMG. But please discuss your concerns with your doctor as your situation is unique due to the lymphoma.

2) Everyone is different. If I give you details, you’ll be checking yourself incessantly in the mirror. The thing is, if you have nerve damage related to the lymphoma or its treatment, it will affect the appearance of your tongue. Did you have any irradiation to your neck and submandibular region? If so, that could definitely affect your tongue. That is not ALS.

3) if you did have radiation, you might also want to discuss with the radiation oncologist to see if this is an expected outcome.
 
Thank you Karen, for taking the time to answer once again. I appreciate it.

Before getting radiation to my neck, I asked my radio-oncologist whether I was at risk for nerve damage. He told me that the radiation dose I was getting (20 Gy) was too low to cause nerve damage. Besides, I started noticing the atrophy before the treatment. My medical oncologist looked at me like I was speaking Chinese when I brought up my concerns. He says these are not side effects of the chemotherapy regimen I was under.

Oh well, I guess time will tell. will see what my PCP says.

Best,
scienceguy
 
I'm so glad your treatment has been successful!

To be brutally honest, if you had visible tongue atrophy due to ALS you would have everyone asking what is wrong with your speech, from family to strangers on the street. You would also have a lot of trouble swallowing. Your tongue can't be 'wasting away' and functioning properly if it were ALS, just plain can't.
Atrophy of the tongue is not a presenting symptom without all the other things that are bulbar and it is not something that goes unnoticed.

Do talk to your doctors, but try to enjoy the successful treatment you have had and concentrate on healing your body, rather than looking for something else even more sinister than what you have faced and beaten.

All the very best.
 
Thank you for sharing your thoughts.

Best,
scienceguy
 
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