agnieszka_piram
New member
- Joined
- May 13, 2023
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- PL
- State
- PL
- City
- Warsaw
Hello,
my name is Agnieszka (Agnes) and I am from Poland (33 years old). Sorry for my bad English. I found this forum about two weeks ago. Thank you for your kindness and support for all people like me.
My problems began about three months ago (pain in hands and feets). I didn't care too much about it. About two months ago, there was shaking in the hands and also in the muscles of the whole body. I've been under a lot of stress lately (finishing my PhD), so I was convinced it was because of that. A month ago, I also noticed fasciculations on my body that would appear for a while and then disappear. Unfortunately, I started reading about my symptoms on the internet and that's how I found als. The same day I visited the neurologist. After the examination he said everything was normal, only he noticed a clear reflex when he hit my cheeks with a hammer (but he said that it happens often). I was calm for a while, but it felt like my muscles were weakening and the fasciculations were still there.
Two weeks ago I visited another neurologist who, after a very thorough examination, said that everything was fine. He also saw my tongue, on which he did not notice any fasciculation. After this visit, I noticed that my left leg was weaker, as if I was dragging it with me (this leg also hurts, in terms of joints and muscles). I had a similar observation with my right hand. At the same time, I can still stand on my toes and heels, climb stairs, and use my hands normally.
Therefore, a week ago I went for an EMG to yet another neurologist (muscles were examined: right dorsal interosseous muscle, left vastus muscle, left anterior tibialis muscle). My EMG was excruciatingly painful (probably because I couldn't lie still due to stress), but it came back completely "clean".
Unfortunately, the problem of the feeling of "pulling" my foot behind me remained. What's more, I feel like I've started talking differently in the past two weeks. I still speak clearly, I work as a lecturer and no one noticed that I had any problem in this area. I asked my family and they deny it too. However, what worries me is that I have to put a lot of effort into speaking clearly. My tongue is kind of hyperactive, sometimes I bite it when I speak, as well as my cheek. I also feel that my tongue gets tired faster. I will add that I am still able to practice tongue twisters or speak fluently. I haven't had any swallowing problems either. But I have a subjective impression that it is different than before: I have to put more effort into speaking clearly and it tires me more than before. I feel like if I wasn't in control of what I was saying, I'd start speaking slurred. It makes me afraid to talk
and I have to talk all the time at work. Also, my tongue is kind of enlarged.
I would like to add that I have been suffering from advanced bruxism for several years, but for many years it was under control and never gave such symptoms as now. Now I sometimes quite consciously bite my tongue, cheeks or lips (it relieves me of stress), I also have pain in the muscles of my cheeks, it seems to me that they are very tense. Unfortunately, I also sleep very badly, maybe five hours a day max.
My questions:
1) Does this tongue problem indicate the onset of bulbar als?
2) Could it start with me having a subjective difficulty speaking clearly when others don't acknowledge it at all?
3) I don't know if I understand it correctly: if I had bulbar als, I wouldn't be able to speak normally at all (it's still possible for me, but I'm afraid it won't be soon)?
4) If the EMG was "clean" and the two clinical tests were ok, then I can assume that I don't have als at this point? I had no bulbar area tested.
Thank you very much for your time. I am very sorry for my long post.
Regards,
Agnes
my name is Agnieszka (Agnes) and I am from Poland (33 years old). Sorry for my bad English. I found this forum about two weeks ago. Thank you for your kindness and support for all people like me.
My problems began about three months ago (pain in hands and feets). I didn't care too much about it. About two months ago, there was shaking in the hands and also in the muscles of the whole body. I've been under a lot of stress lately (finishing my PhD), so I was convinced it was because of that. A month ago, I also noticed fasciculations on my body that would appear for a while and then disappear. Unfortunately, I started reading about my symptoms on the internet and that's how I found als. The same day I visited the neurologist. After the examination he said everything was normal, only he noticed a clear reflex when he hit my cheeks with a hammer (but he said that it happens often). I was calm for a while, but it felt like my muscles were weakening and the fasciculations were still there.
Two weeks ago I visited another neurologist who, after a very thorough examination, said that everything was fine. He also saw my tongue, on which he did not notice any fasciculation. After this visit, I noticed that my left leg was weaker, as if I was dragging it with me (this leg also hurts, in terms of joints and muscles). I had a similar observation with my right hand. At the same time, I can still stand on my toes and heels, climb stairs, and use my hands normally.
Therefore, a week ago I went for an EMG to yet another neurologist (muscles were examined: right dorsal interosseous muscle, left vastus muscle, left anterior tibialis muscle). My EMG was excruciatingly painful (probably because I couldn't lie still due to stress), but it came back completely "clean".
Unfortunately, the problem of the feeling of "pulling" my foot behind me remained. What's more, I feel like I've started talking differently in the past two weeks. I still speak clearly, I work as a lecturer and no one noticed that I had any problem in this area. I asked my family and they deny it too. However, what worries me is that I have to put a lot of effort into speaking clearly. My tongue is kind of hyperactive, sometimes I bite it when I speak, as well as my cheek. I also feel that my tongue gets tired faster. I will add that I am still able to practice tongue twisters or speak fluently. I haven't had any swallowing problems either. But I have a subjective impression that it is different than before: I have to put more effort into speaking clearly and it tires me more than before. I feel like if I wasn't in control of what I was saying, I'd start speaking slurred. It makes me afraid to talk
and I have to talk all the time at work. Also, my tongue is kind of enlarged.I would like to add that I have been suffering from advanced bruxism for several years, but for many years it was under control and never gave such symptoms as now. Now I sometimes quite consciously bite my tongue, cheeks or lips (it relieves me of stress), I also have pain in the muscles of my cheeks, it seems to me that they are very tense. Unfortunately, I also sleep very badly, maybe five hours a day max.
My questions:
1) Does this tongue problem indicate the onset of bulbar als?
2) Could it start with me having a subjective difficulty speaking clearly when others don't acknowledge it at all?
3) I don't know if I understand it correctly: if I had bulbar als, I wouldn't be able to speak normally at all (it's still possible for me, but I'm afraid it won't be soon)?
4) If the EMG was "clean" and the two clinical tests were ok, then I can assume that I don't have als at this point? I had no bulbar area tested.
Thank you very much for your time. I am very sorry for my long post.
Regards,
Agnes
