Mike12345
Active member
- Joined
- Feb 28, 2020
- Messages
- 37
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- AU
- State
- VI
- City
- Mel
Hello all.
I had a previous thread which was closed, and I am unfortunately back with news on progression.
Initially when I posted I was undertaking several tests. I had some 5 emgs which all had various different abnormalities (none with signs of acute denervation), but were all not overly specific. Settled on a diagnosis of cramp fasiculations syndrome.
I attempted to get on with my life. However things didn't progress as hoped, and I am now presenting with substantial atrophy in all 4 limbs, neck atrophy ,(5cm loss of diameter in 2 months), I also now have a hoarse voice, this feeling is the scariest thing I have ever felt. It is very difficult to sleep, as my throat feels it has something permanently stuck in it and I can't get enough air through.
Where my muscles once were there are fatty deposits like mushy cellulite. I was a very muscular person my whole life.
It is definately true that when u have true atrophy and weakness you will know for sure. It is unmistakable.
I have also noticed I have become very self centered and obsessed, and my personality is not me. Not sure if this is fear or FTD.
I have my neurologist appointment tomorrow to confirm this clinically. My GP has noted the changes.
I am struggling very much with the gravity of all this happening at 32.
I had a previous thread which was closed, and I am unfortunately back with news on progression.
Initially when I posted I was undertaking several tests. I had some 5 emgs which all had various different abnormalities (none with signs of acute denervation), but were all not overly specific. Settled on a diagnosis of cramp fasiculations syndrome.
I attempted to get on with my life. However things didn't progress as hoped, and I am now presenting with substantial atrophy in all 4 limbs, neck atrophy ,(5cm loss of diameter in 2 months), I also now have a hoarse voice, this feeling is the scariest thing I have ever felt. It is very difficult to sleep, as my throat feels it has something permanently stuck in it and I can't get enough air through.
Where my muscles once were there are fatty deposits like mushy cellulite. I was a very muscular person my whole life.
It is definately true that when u have true atrophy and weakness you will know for sure. It is unmistakable.
I have also noticed I have become very self centered and obsessed, and my personality is not me. Not sure if this is fear or FTD.
I have my neurologist appointment tomorrow to confirm this clinically. My GP has noted the changes.
I am struggling very much with the gravity of all this happening at 32.