Getting the lingo right

[Green Queen]

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

 

[Gembead]

Hey Janelle, I can't imagine how frustrating this all is for you, we only had a 5-6 week wait before BJ was diagnosed , I know all we wanted was a definite diagnosis so we could move on and plan for what ever, we didn't like the results we got but at least we can move forward. Hugs to you dear Lady, I have many sleepless nights trying to plan what may lay ahead and how we will manage.
Love Gem

 

[Tractor Boy]

Janelle, you lost me immediately by referencing the cupboard thing...please clarify. TB

 

[Green Queen]

Come on TB...keep up!
I was all good, no symptoms, no anything, then I tried to move this...

In the weeks following, I started noticing things, like my slip on shoe wouldn't stay on, my writing went pear shaped...the doctors (all seven of them) say coincidence.

J x

 

[billbell52]

I know it is frustrating. The problem is ALS can present as PLS initially. Usually after 5 years ALS symptoms (lower motor neuron) will show up. In my case I have Bulbar PLS, starts with speech. Bulbar ALS typically progresses quickly so after 2 years I had no ALS symptoms and was given a PLS diagnosis.

 

[Green Queen]

Thanks, BB. Gosh this really is a test of patience....not my strong point...just ask my kids!
Well I'm into my second year from the episode...so hopefully the trip to Sydney in September will give me the answers I long for.
God bless, Janelle x

 

[LifeEnthusiast]

It's a tough road, Janelle. I have been same diagnosis merry go round and often stay up at night thinking. Hang in there. Fingers crossed September will provide you with the answers you need to sleep at night.

 

[karla r]

I will be saying a prayer that you get the answers when you go. It is hard not to know, although knowing you have ALS diagnosis is worse. I am a plan ahead person. Way way ahead. My oldest granddaughter is only 6, but I had picked out what I wanted my gown to look like 3 years ago for her wedding! Limbo for me is torture. I do not know what disabilities to plan for in the future, or how fast to plan for them.

 

[AKmom]

Janelle, it does require patience. It took about 16 years for them to get me the correct diagnosis of PLS. During which time I had several other illnesses and events that muddied the waters of diagnosis. And many mis-diagnosis too. Live life to the fullest now. Diagnosis will come soon enough.

 

[cheerleader]

Green Queen, looks like that cupboard is full of model cars? Your husband's? If so, think you can blame the whole episode on HIM! Lol. ALS does warp one's humor!