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I got told today they can't cure me. Handhold?

(233 Posts)
weegiemum Thu 26-Jun-14 22:39:14

I've got a relapsing/remitting (mainly relapsing) neurological illness.

It's rare, about 50 people in the uk get it every year.

I get fab treatment but - it's the end.

I won't be walking in 5 years. After about 8 I'll need oxygen to breathe as my chest muscles get involved. 10-15 is what I can cope for.

My dc are dd1 (14), ds (12) and dd2 (10).

I'm not going to be there for them as they grow up, get married, have my grandchildren.

Shit, isn't it?

RandomMess Thu 26-Jun-14 22:40:33

Yes it is flowers sad

RhondaJean Thu 26-Jun-14 22:41:22


I don't know what to say.

Yes it's shit, and it's unfair, and I am so sorry.


PinkSquash Thu 26-Jun-14 22:41:27

flowers it is shit. sad

AtYourCervix Thu 26-Jun-14 22:41:30

Shit Weegie.

eosmum Thu 26-Jun-14 22:41:52

Beyond shit. I'm so sorry.

Sidge Thu 26-Jun-14 22:42:10

Utterly utterly shit.

I'm so sorry.

AtYourCervix Thu 26-Jun-14 22:42:12

That was cpmpletely unhelpful. Sorry.

But Shit. That is shit.

CoteDAzur Thu 26-Jun-14 22:42:26

I'm so sorry, weegie :-(

Total shit. It's not fair at all.

Biscuitsneeded Thu 26-Jun-14 22:43:36

Oh Weegie, that's shit. I'm so sorry. I have no words of wisdom but you can most certainly hold my hand xx

NomNomDePlum Thu 26-Jun-14 22:43:44

totally shit. am extremely sorry.

weegiemum Thu 26-Jun-14 22:43:50

I think I just have to do what needs done now

Dh is awesome, and a doctor so he gets it.

I just have to do all I can for my dc while I can.

ScarlettDarling Thu 26-Jun-14 22:43:50

Oh im so very sorry. Will say a little prayer for you tonight. And don't give up hope,a lot can change in 5 years xxxx

Nonie241419 Thu 26-Jun-14 22:44:04

I'm so sorry :-(

ItHasANiceRingWhenYouLaugh Thu 26-Jun-14 22:44:08

Weegie I have been with you on Spoons threads and seen you around, while I was under various names.

I'm so, so, so sorry to hear this. Truly awful. thanks

BlackeyedSusan Thu 26-Jun-14 22:44:13

oh love, sorry to hear that. much love.

BikeRunSki Thu 26-Jun-14 22:44:33


That is shit

Is it possible that treatments might improve in the next few years?

My dad had Parkinson's + other stuff. Treatment wasn't great 40 years ago, and he was told he had no more than 5 years to live on diagnosis. He lived 12 more years, then died of pneumonia. You may still see more than you think.

MaryBennett Thu 26-Jun-14 22:45:36

Yes, it's bloody, bloody crap and I wish I could say something that would help.

RevoltingPeasant Thu 26-Jun-14 22:45:40


They can't cure you today. But 10 years is a long time and who knows what advances they may have made.

And some people defy the predictions. Stephen Hawking being one example. Keep fighting. And posting.

ProtegeMoi Thu 26-Jun-14 22:45:44

I am so very sorry. Life is beyond cruel sad

DramaAlpaca Thu 26-Jun-14 22:45:49

Oh weegie, I'm so sorry flowers

SocialMediaAddict Thu 26-Jun-14 22:45:55

First thread that has ever brought a tear to my eyes. Completely SHIT!!!

Dig deep honey. I believe in medical science and let's hope for a cure. Amazing what can develop in 5 years.

BiscuitMillionaire Thu 26-Jun-14 22:46:10

That is very very cruel. I'm sorry. thanks

MrsWolowitz Thu 26-Jun-14 22:46:37

I'm so sorry sad

weegiemum Thu 26-Jun-14 22:47:03

There are possibilities - in the US my illness is being treated with severe chemo and stem cell therapy.

But I need to make the most of NOW because that's what I have.

Knitting a blanket for our sofa right now!

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