scienceguy
New member
- Joined
- Jan 27, 2019
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
- City
- NA
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
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