corwin
Active member
- Joined
- Oct 20, 2015
- Messages
- 47
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- BG
- State
- VN
- City
- vn
Hi to all.
I have some more threads but they are closed.
I way saying that i won't write here again but i think it will be ok for another people to find more information.
So I have some symptoms for 1 1/2 years.. mainly bulbar.
I am 32 years old men in good shape( i was before symptoms)
If you can read my old post you will see what are my complains.
So for now everything has progressed.
I have - more tongue atrophy. I will put some picture. Intereating in this kind of atrophy is that it is almost 100 bilateral but in the side line of the tongue. In the center there is nothing. The tongue is quite strong, i can moove it, to touch my molars, push the cheeks, but it is getting more and more atrophied. The most interesting part is that it is almost 24/7 hours a day tingling and burning. Where is tingling there is the atrophy. The only thing that stops tingling is prednisone. When I was on 60mg a day I almost forget about tomgue issue. But now when I taper it down it to 25mg a day, it is constant
- twitching. My whole body is twithching like hell...
From foot to head. Even in ears. With prednislne twitching is less but still there.
- swallowing difficulties - i just cannot swallow or when i do it my throat is clicking or is weak. It is interesting because i don't choke often. Mostly I have trouble with saliva. I can swallow 10 pill on one time, to drink 500mm. Water for 10 seconds but cannot swallow my own salliva.
-dry eyes with some pain
- my whole body is shaking. Every miscle is shaking from a smallest exersise.
-heat and cold inrolerance. I am shivering in cold and feeling like i am melting in hot
- chewing difficulties. My jaw muscle are getting stiff my steak or nuts. This is better now, but was terrible.
- trouble breathing
-weak soft palate - it is rising ok but it is getting down. The uvula now is touching my tongue
- 1 month ago for.1 week my face was like a mask
I just cannot smile or make impression. Now is ok - this stays for 1 week.
- I have whole body weakness. Not clinical but i feel jelly legs.
- my rigjt eyelid twitches for.3 months non stop..
- the last that consinced me i have als is from 2 weeks
When i exhale i can feel my ear poping like eustachy tube is not sealed and i can hear the air going behind my nose. I cannot explain it but i think it is from weakness in soft palaye or airwave muscles.
It is interesting tht some das i am ok but another not so ok.
By ok I mean sympthoms are less prominent.
I have no major speech change, just this atrophy and burning in the tongue. I have some pictires from before and after and deffinitelly tongue is getting smaller. Some days i feel so fatigued i cannot speak, another i feel quite ok.
Till now i have 5 clean emg.
Last one was 2 months ago before nasal speech and it was clear. They tested but only 5 muscles - 3 in legs 1 biceps and one muscle on the jaw...
Really don't know what is happening but i am getting more and more desperated.....
The 'good' thing is I don't have tongue twitches. Only sometimes.and i feel.them - they are like electric shocks. When tongue is resting there are no twitches.
Blood test for.everything are clean...
Hoping(it is so stupid to say it) for myasthenia but blood test are in normal limits.
Deffinitelly something is wrong...
I don't know... doctors also... everything starts.with one flu and my lymph nodes around neck.were enlarged...
My question for members with more experience:
Isnt it weird? Must it not progressed more rapidlly for 1 1/2 ? How can my tongue loss tissue without dirty emg and on 1/2 of his size to be strong enough? How can explain this thing with prednisone?
Greeting
Corwin
I have some more threads but they are closed.
I way saying that i won't write here again but i think it will be ok for another people to find more information.
So I have some symptoms for 1 1/2 years.. mainly bulbar.
I am 32 years old men in good shape( i was before symptoms)
If you can read my old post you will see what are my complains.
So for now everything has progressed.
I have - more tongue atrophy. I will put some picture. Intereating in this kind of atrophy is that it is almost 100 bilateral but in the side line of the tongue. In the center there is nothing. The tongue is quite strong, i can moove it, to touch my molars, push the cheeks, but it is getting more and more atrophied. The most interesting part is that it is almost 24/7 hours a day tingling and burning. Where is tingling there is the atrophy. The only thing that stops tingling is prednisone. When I was on 60mg a day I almost forget about tomgue issue. But now when I taper it down it to 25mg a day, it is constant
- twitching. My whole body is twithching like hell...
From foot to head. Even in ears. With prednislne twitching is less but still there.
- swallowing difficulties - i just cannot swallow or when i do it my throat is clicking or is weak. It is interesting because i don't choke often. Mostly I have trouble with saliva. I can swallow 10 pill on one time, to drink 500mm. Water for 10 seconds but cannot swallow my own salliva.
-dry eyes with some pain
- my whole body is shaking. Every miscle is shaking from a smallest exersise.
-heat and cold inrolerance. I am shivering in cold and feeling like i am melting in hot
- chewing difficulties. My jaw muscle are getting stiff my steak or nuts. This is better now, but was terrible.
- trouble breathing
-weak soft palate - it is rising ok but it is getting down. The uvula now is touching my tongue
- 1 month ago for.1 week my face was like a mask
I just cannot smile or make impression. Now is ok - this stays for 1 week.
- I have whole body weakness. Not clinical but i feel jelly legs.
- my rigjt eyelid twitches for.3 months non stop..
- the last that consinced me i have als is from 2 weeks
When i exhale i can feel my ear poping like eustachy tube is not sealed and i can hear the air going behind my nose. I cannot explain it but i think it is from weakness in soft palaye or airwave muscles.
It is interesting tht some das i am ok but another not so ok.
By ok I mean sympthoms are less prominent.
I have no major speech change, just this atrophy and burning in the tongue. I have some pictires from before and after and deffinitelly tongue is getting smaller. Some days i feel so fatigued i cannot speak, another i feel quite ok.
Till now i have 5 clean emg.
Last one was 2 months ago before nasal speech and it was clear. They tested but only 5 muscles - 3 in legs 1 biceps and one muscle on the jaw...
Really don't know what is happening but i am getting more and more desperated.....
The 'good' thing is I don't have tongue twitches. Only sometimes.and i feel.them - they are like electric shocks. When tongue is resting there are no twitches.
Blood test for.everything are clean...
Hoping(it is so stupid to say it) for myasthenia but blood test are in normal limits.
Deffinitelly something is wrong...
I don't know... doctors also... everything starts.with one flu and my lymph nodes around neck.were enlarged...
My question for members with more experience:
Isnt it weird? Must it not progressed more rapidlly for 1 1/2 ? How can my tongue loss tissue without dirty emg and on 1/2 of his size to be strong enough? How can explain this thing with prednisone?
Greeting
Corwin