Diagnosed with aggressive familial MND

[Pookie]

So not great news today. My worst fears have become reality. I have MND.
Muscle waste in bicep and tricep muscles. Did all the appropriate tests which were not pleasant as you'd all know.

Thanks for your support...

 

[Nikki J]

Re: Could not be??

I am so very sorry. We are here for you.

 

[starente15]

Re: Could not be??

So sorry you got confirmation of MND. You'll find lots of support here.

 

[lgelb]

Re: Could not be??

Very sorry to hear this news. We are here to help however we can.

Best,
Laurie

 

[affected]

Re: Could not be??

so sorry

 

[Pookie]

Re: Could not be??

Thanks everyone.
Now I don't know how to tell my mum as I don't know how she'll cope having lost dad too. Then there's my gorgeous 7 and 10yr old girls??? How do I tell them I'm going to die? They are really clingy, affectionate kids and don't know how they'll cope.
Then there's my sister....
My poor gorgeous husband, he's a broken man...

 

[Nikki J]

Again I am sorry. I am sure your mum and sister live in fear of this. They will be horrified and devastated of course but they will not be completely unprepared. I am so sorry about your children. Can you get professional counseling advice? My sister did that when she was diagnosed - her daughter was nine. I do think you need to be honest with them and unfortunately from what you have said of your family history they need to be told something fairly quickly.

It is different when you are FALS- you KNOW really know what is coming from those first words.

 

[gooseberry]

Pookie, Take a deep breath and let it out. Now, give your family a hug and live your life to its fullest.

 

[soonerwife]

So sorry Pookie! The words that no one wants to here.

 

[scaredwifetx]

I am so very sorry Pookie. I cant even begin to tell you how to tell your family. The next few weeks will be so very hard emotionally for everyone. My thoughts and prayers are with you and your family.

 

[Pookie]

Doing it really tough and constantly feel nauseas. I'm on anxiety medication which helps me sleep but whenever I think about my future, telling the kids and friends, I start dry wreaching. Feel like I have morning sickness all over again...
The other thing is my neck constantly aches and I've noticed a couple of bulging bones on the back of my neck. I know my neck is weaker and think it's a combination of that and also using my neck muscles to compensate for my tricep and bicep not working. Can the neck go this soon? I'm also finding my arm is getting worse each day and can barely put behind my back.
Still haven't told the kids.... can't bring ourselves to shatter their perfect world...

 

[Nikki J]

Really sorry. There are no hard and fast rules here so yes your neck could be affected. Did Dr Talman hook you up with services/ contacts or are you in contact with the MND association? Others know your system better but it sounds like a neck collar would be helpful

 

[affected]

Have you been in contact with MND VIC?
I would also recommend you register immediately with palliative care as they will give you a lot of support well before the end stage.

Bethlehem should have give you some support but MND VIC will be your big one.

They can help you with the anxiety as well as everything else. How you are feeling is totally justified, this is the biggest shock imaginable. I think getting some support in place for you will be most important so you get over the initial shock a little and are as ready as possible to tell your children. xxx

 

[Pookie]

I'm waiting on Dr Sue Mathews from Bethlehem to give me a call but I'm assuming she won't do that until Paul receives my blood test and Spine/neck MRI results I had on Thursday and he can then 'formerly' diagnose me. Even though I failed the nerve tests (emg?) and he agreed with us when we said we know I have it, he has to rule everything out first. I'm sure you all went through that too.... I remember that frustration with dad. Feel like we're in limbo as we don't want to tell kids or friends until we are 100% sure.
I suppose at that point I can take action and start making calls for support.
Thanks again for your replies. Nice knowing you're there. How far advanced are you? Sorry I haven't asked anything about you and it's all been me....x

 

[affected]

You could call MND VIC on Monday anyway I'm sure and start finding out how they can best help you out.

For us, we were seeing various types of doctors, but not neurologists for about 6 months before I took Chris to a speechie at the local hospital who pinned it in minutes. (he was bulbar onset)

It did then take a month to get to an MND clinic up in Brisbane, and he was diagnosed within minutes by clinical exam and the tests all the other doctors had done. We actually didn't have an EMG before diagnosis, but Chris was rapid progression and he was classic and there was no doubt. He then elected to refuse the EMG that was set for months later, as it's a 3 hour drive to Brisbane without traffic, and really it wasn't going to tell us anything we didn't already know as he was unable to work by the point of diagnosis.

I hope you get in touch with services quickly. MND NSW were truly incredible with helping us both with equipment and linking up with services.