Green Queen
Very helpful member
- Joined
- Mar 30, 2015
- Messages
- 1,304
- Reason
- DX MND
- Diagnosis
- 4/2016
- Country
- AUS
- State
- Western Australia
- City
- By the beach
I have often wondered what the correct terminology for everything is.
As you know, I seemed fine before the damn cupboard...
Do I say the cupboard incident was onset, or the 'episode' I had about two years later...is that even called an 'episode'? That was when it all hit the fan. My foot drop was something I could no longer hide, my arm particularly useless and my face drop happened. I could no longer deny something was wrong with me. The episode was April last year, and that was the beginning of hospital visits, testing and the Neuro merry go round.
I have the 'diagnosis' from November, the Sydney guy concurs, but won't commit.
So do I have a diagnosis, am I just waiting for 'final diagnosis'? If mills is a part of PLS, and PLS has a long diagnostic time frame...which could lead to ALS...will a diagnosis EVER be final?
Also, people say that they "heard I was unwell"...but I'm healthy. Biggest I've ever been, but healthy. I'm not sick. I'm not unwell, poorly...any of that. So what am I?
I don't have a disease as such, Mills is a Syndrome. People don't get syndrome, so is it wrong if I say I have a disease?
Sorry about this. As Max says it is what it is...but the part of me that can't sleep at night really needs these answers.
Enjoy the weekend everyone.
God bless, Janelle x
As you know, I seemed fine before the damn cupboard...
Do I say the cupboard incident was onset, or the 'episode' I had about two years later...is that even called an 'episode'? That was when it all hit the fan. My foot drop was something I could no longer hide, my arm particularly useless and my face drop happened. I could no longer deny something was wrong with me. The episode was April last year, and that was the beginning of hospital visits, testing and the Neuro merry go round.
I have the 'diagnosis' from November, the Sydney guy concurs, but won't commit.
So do I have a diagnosis, am I just waiting for 'final diagnosis'? If mills is a part of PLS, and PLS has a long diagnostic time frame...which could lead to ALS...will a diagnosis EVER be final?
Also, people say that they "heard I was unwell"...but I'm healthy. Biggest I've ever been, but healthy. I'm not sick. I'm not unwell, poorly...any of that. So what am I?
I don't have a disease as such, Mills is a Syndrome. People don't get syndrome, so is it wrong if I say I have a disease?
Sorry about this. As Max says it is what it is...but the part of me that can't sleep at night really needs these answers.
Enjoy the weekend everyone.
God bless, Janelle x