Sydney Trip

[Green Queen]

Hello all. As I have let you know, I am seeing a neurologist in Sydney, tomorrow! We travelled from Geraldton to Perth yesterday and Perth to Sydney today. My brother Allan picked us up from the airport...I was concerned after so long I may not recognise him but other than slightly more grey hair he hasn't changed. Anyway, doctor tomorrow. Hopefully it will be worthwhile. I don't really know how to add a picture here, but I'm going to add a little picture of our view from the hotel by night to My Album. My kids are having a great time sitting at the window watching the world go by. Please keep me in your prayers for tomorrow. God Bless, Janelle x

 

[Gembead]

All the very best for tomorrow Janelle, you will be in my thoughts and prayers, love and hugs.
gem

 

[Jeanau]

You're in my thoughts Janelle. I hope you get some answers and reassurance.

 

[MaxEidswick]

>I don't really know how to add a picture here

love SYD!

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[4tloml]

Thinking of you and your beautiful family. Good wishes.

 

[affected]

Thinking of you in Sydney

 

[affected]

Janelle, how did you go with the neurologist there?

 

[Green Queen]

Hi Tillie...well...
The first bloke we saw was "quite" sure I may just be unlucky and have a lesion in the wrong spot, hence the progressive weakness/stiffness.
He sent me to another bloke, Matthew Kiernan, who is a world expert on MND (he won the Forbes Norris Award 2014 which is for MND stuff). I had to do another EMG on both legs and arms, then they put this 'thing' on my head which sent electric type pulses through my body to check reactions. Cutting edge stuff I was told.
Please forgive me, I really don't know all the correct lingo and I'm still absolutely exhausted from it all.
He seems to think it could be Mills Syndrome, which was described in 1900 by some bloke Mills. Matthew (he actually insisted we call him by his Christian name) said there's only ever been 11 cases of it...ever.
There's a little out there to read but not much...from what I can gather it's a rare form of PLS.
They took a heap of blood as I agreed to be part of some research to see why MND in any form happens. Glad to be useful.
I also have to return to Sydney in 6 months time to repeat all the tests and have a few more. They have this you beaut machine for PET scans apparently.
I obviously had my heart set on 'Why yes, Janelle, you definitely have PLS. Go home and enjoy the wonderful things each day rewards us with...' Did NOT expect to go back to square one and a half!
So, I'm slightly deflated from the experience. Building oneself up over important matters is not always a good thing. It may take me a few days to lose the depressed feeling and pick myself up and get on with it. Prayers please.
Mind you, it was WONDERFUL to see my big brother!
God Bless, Janelle x

 

[MaxEidswick]

>So, I'm slightly deflated from the experience

hhang in there Janelle! We are withh you

 

[Clearwater AL]

Janelle, it's frustrating that you are back on the diagnostic merry-go- round... and round and round it often seems. I know you had your heart set to get a confirmed diagnosis of PLS but... not really. It's better than something else but often it can become something else. The old saying, "Be careful what you wish for... it just may come true." As I wrote to you earlier in so many words... that first Neuro who told you that you had PLS was a little early in the diagnostic criteria. Hemiparesis (weakness just one side) alone can be so many other things. Too bad they won't do the PET Scan sooner... even that is only a 60 to 70% indicator but it can help with other tests to determine a diagnosis. You've probably read this here often... be patient. Keep active as much as possible. I've written this many times, a Neuro told me concerning PLS, "Use it or lose it... sooner." The trick is not to over do it.
Finally, the day after you do receive a diagnosis... nothing changes other than you have a name to give it.

 

[affected]

Deep breath Janelle.

It must have been exhausting. The strangest thing about being 'in limbo' on a diagnosis is that it feels so frustrating and you just want them to sort it out and tell you what is going on. Then when you are told you wish you could go back to ignorance ...

As Al says, the PLS diagnosis is a far longer process than ALS, and for many of us the ALS process was long! It took us 9 months to have Chris diagnosed, but that was because we weren't being referred to the right places.

At least you have been seen by the best specialists, so you know that they will give it to you straight even if it's a wait and see for longer. Most doctors in Australia use first names, and I actually make a point of calling them by first name as we are all people and they call me by my first name after all

Concentrate on how good it was to see your brother, and that you now look after yourself, document any progression and start a list of questions you need answered in 6 months time. As the months progress you might cross some questions off, that doesn't matter, just make some goals and know that others with PLS have experienced the same long wait.

You will still get support here as you plod along

 

[Gembead]

Sorry your trip wasn't as successful as you hoped. Glad you enjoyed your time with your Brother.
Make the most of your good days, make plenty of memories, on the not so good days take time to rest and relax, who cares if the house work isn't done as there are more important things in life.
Hugs to you Janelle.
Love Gem

 

[Green Queen]

Thank you everyone for your kind, heartfelt words. Today I feel as though I've been in the dumps long enough, I'm ready for whatever tomorrow will bring.
God bless, Janelle x

 

[Gembead]

Good to see you back Janelle. Big hugs
Love Gem

 

[MaxEidswick]

>I'm ready for whatever tomorrow will bring.