Just diagnosed and scared

[Tammyx]

Hi,

I'm 27 and was diagnosed with MND last Tuesday. This last week's been a storm of tears, fear, anger and 'I must be strong'.

My aim in life has always been to get a good job, house, car and then have a family. I bought my own house in May this year and landed an amazing new job last month (not even started yet!)
I'm so scared, I have no children, horse riding is my passion and my horse is my baby.
I've spend the whole week trying to come to terms that I'll never have a baby and I'll have to give up my passion.
How do you get through that?

Not 100% what my diagnosis is fully yet. The neurologist just said MND and that I be put on Riluzole so I'm guessing it's ASL.

I just keeping thinking why me? I'm young, healthy, I keep fit and eat well.

Trying my hardest to be strong for my family and friends

 

[lgelb]

Tammy,
So sorry to hear about your diagnosis. You don't have to be strong. Just know that there is still good life to lead.

There is no point in wondering why. We don't know, but it wasn't anything you did.

And you can't "come to terms" with this stuff in a week. Take it one day at a time. Accept that there will be days when you can't think straight. But--

You have to live with this until you can't, or your living is done. Enjoy the house, start the amazing new job, be with your horse. Live every day.

Meanwhile...also start planning for future days, too, just as you obviously have done before to have what you have. You don't need to rehash the diagnosis every day. Just some days, at first, to get done what needs doing -- perhaps telling those who need telling, filing for benefits, evaluating the accessibility of your house and such. From what I have heard, there are quite a few resources in the UK for MND so you will have help, even before friends and family.

You have more strength in you than you know, but you will not be alone in this, either.

Best,
Laurie

 

[Lkaibel]

Tammy,

What Laurie said! I am so sorry this happened to you, but she is right. You have living left to do.

 

[KimT]

Tammy, I'm so sorry to have to welcome you here. Keep living. I wish I hadn't spent the first year after my dx planning. You DO have to plan but you need to enjoy life each day.

 

[Tammyx]

Thank you all.

As I'm sure everybody on this forum has said, never in a million years did I think this would happen to me.

This 2 weeks between diagnosis and my first appointment with the consultant feels like hell. My original appointment was on the 18th Dec but I had it pulled forward as there was no way I could sit in limbo for over 4 weeks!

My partner is adamant I will beat this which breaks my heart as I know there is no cure.

I'm just glad I found this forum, I feel a little less alone.

Thank you x

 

[Tammyx]

I'm not even 27, I'm 26!
I don't even know how old I am anymore

 

[Nikki J]

Sorry to welcome you. Wishing you a slow progression. If you have not yet seen it there is a sticky post in the General subforum on second opinions / first clinic visit. It might help you prepare for your consultant visit

Look forward to getting to know you

 

[Tammyx]

Thank you Nikki

It has defiantly answered a few questions as was pretty much clueless to what would happen during my first consultation. This is nothing to do with the neurologist that gave me the bad news, I went alone thinking I'd be sent for yet another test so didn't take much in other than MND and 2 years.....

 

[Nuts]

I am so sorry to welcome you to our club. This diagnosis is an emotional roller coaster that just doesn't stop--but it does slow down so that you can continue to enjoy life.

My husband and I decided early on (and by that I don't mean week 2 that we would not waste the time we have. It's hard some days, but on others we just live the life we have and enjoy it. The same month that he was diagnosed, a good friend's sister (our age) died of an sudden and expected heart attack. I try to remind myself that that could have been my guy, so every day is a gift.

I am sorry that your partner is unable to face the truth of this, but perhaps it will just take time.

You found a wonderful place for information and support. Please come often and post much.

Becky

 

[WendyWooG]

Hi Tammy
So sorry about your diagnosis. Did you neuro give you the details of the mnd association? They are a great support network here in the U.K. There is a great website and if you ring the help line they will send you out an information pack.

The first little while will be such an emotional roller coaster, big hugs
Wendy x

 

[Tammyx]

Hi Wendy

Yes he did give me the website along with the email and contact number of the nurses at the MND departments. I actually struggled reading the MND association page as I found it was directed at an older generation than me and it actually made me feel worse

I've given up reading things now, just going to see whats said at my appointment on Monday and go from there.

Becky I know what you mean. A friend has a very poorly little boy and he really puts things into perspective. He must only be 6 yet smiles everyday.

Thank you x

 

[Nikki J]

Have a look at young faces of ALS. It might help to see you are not alone

 

[Tammyx]

Hi all,
I met with my consultant yesterday. Sadly he's confirmed it's MND and that I'm on the ALS spectrum.
I start on Riluzole in the next day or two as soon as my bloods some back.
My arms aching more and I feel a difference in my leg, it seams my hopes of slow progression has gone out of the window

 

[Firefighter58]

Hello Tammyx, try not to feel down, here you are surrounded by wonderful people. We are all in your corner and going down same same road, try and get up in the morning with a smile on your face and say I wonder what today will bring. We all have something we can't control so be happy and live your life as best you can.

 

[scaredwifetx]

Hi Tammy. I am so very sorry about your diagnosis. We have a young lady at our clinic who is also in her 20's. Her name is Sunny. She has several websites and is so very inspirational. You are young but that should work for you not against you. I know right now its so very hard to see any future. Give yourself some time to take it all in and get over the shock. Once you are past that point then try to start living each day by not counting each day.

There is no set path with this disease and no set time table. Take on what you can and forget the rest. Make sure to eat well, drink a lot of water and don't over do it. Anytime you have a question or need moral support you will find it here. No White Flags!