Just diagnosed

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Janbrit

Active member
Joined
Jul 16, 2014
Messages
81
Reason
PALS
Diagnosis
08/2014
Country
Uk
State
Kent
City
at the back of beyond
Ah well August was good while it lasted! New EMG yesterday plus MRI and saw the consultant afterwards, definate now it is MND and talk of putting me on rizuole, guess I will have to unpack my bags :neutral:
 
Re: D day tomorrow

I am sorry. We welcome you back but wish it were not so!
It sounds like you are quite early in the process so I hope you benefit from the riluzole a lot!
 
Re: D day tomorrow

:-( ... Sorry to hear, let's hope it's not ALS! Don't unpack yet.

How old are you and how far is your progression?

Kind regards,

Max
 
Re: D day tomorrow

I will be 55 in December, right leg has lots of muscle wastage, left leg becoming the same, hands can no longer high five, they just drop down at the wrist, can no longer hold a pen for very long, thank goodness for iPads! I am feeling quite calm, I know my progression is a little faster than I would have hoped for, no muscle wastage in the forearms was apparent in June, now very easy to see, I have had a full work up including the dr yesterday who was the Neuro muscular specialist, she made her decision made on the clinical exam but more so on the EMG results which when done in June showed no denervation, fast forward till yesterday and she says it is 'chronic'. I am going to look on the positives and just hope that she has it wrong and maybe this is just ageing! Have just received a phone call saying the MND nurse will be in touch :(
 
Re: D day tomorrow

That's fast. Sorry.

Suggest a second opinion.
 
Re: D day tomorrow

sadly that was the second (fourth) opinion; first three all said likely MND but because EMG was clean in June they wanted me to go to Kings which is our centre of excellence here in the UK, Professor there said he wanted to look for something else, saw the Neuro Muscular lady Consultant yesterday and she says MND
 
Re: D day tomorrow

I am really sorry. We will be here for you. Don't hesitate to ask questions.
 
Re: D day tomorrow

I"m so sorry to be welcoming you here, we all hoped you would not be unpacking your bags.

Nikki maybe this thread could be moved to newly diagnosed or something so everyone can give full welcome, lots of members don't read anything here.

We will be here to help support
 
Re: D day tomorrow

Would be lovely if it could be moved thank you all for your kind words x
Jan
 
Jan, Sorry you are joining our club but welcome. I was diagnosed in June and it's been a rocky road. I think I'm settling in now. I look forward to getting to know you. Come back soon!

Lynne
 
sadly, welcome :-(


...
 
sadly, welcome :-(


...
 
Yes Jan sadly welcome to the one club no one wants to join. I too was diagnosed in June and have already seen some rapid decline. I hope yours levels out.
The 2 things I learned here:
1. Dont get sick-we don t heal well especially from respiratory infections
2. Dont fall-injuring yourself will speed up progression.
3. Dont lose weight-that will speed up progression

Well thats 3 things...
 
well said, Neil!
 
Sorry you have to be here but Welcome to a great group of people. Well, at least that's my opinion! Everyone is here to help you
Dianne
 
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