It could be MND

[Limana68]

Hi there
I have just registered, so hello to one and all. My hubby has been having tests all day today at the hospital, as for pasy yr he has had speech problems, and for past 2 mths he has lost weight, has balance problems, co-oordernation problems, aches in calves, thighs and upper arms, and for past month, extreme fatigue and losing weight.
I finally got him to the docs,and he was urgently referred to the neurogist.
After the tests, the neurologist said he was quite sure my hubby has mnd but he has to go for an mri and afew other tests before he can confirm.
I am so numb and cant quite take it in................ hes going back to hosp 2moro for more blood test and he has to wee in a container for 24 hrs..........

So just wanted to say hi and that my hubby is refusing to think about mnd at the mo and refusing to read anything about it.

We ahve 2 young kids and I am just so scared.

Li xx

 

[CindyM]

Hi Li- I am sorry to hear your hubby is having troubles. I'll keep him in my thoughts. Hugs, Cindy

 

[thelma313]

Hi Li,

I am so sorry to hear that you and your husband is going through this. I really hope that it turns out NOT to be MND. I am a bit of a newbie myself. My dad was diagnosed about a month ago and we had absolutely no idea what was coming. His neurologist suggested that it was Myasthenia Gravis which is a lot less severe and not terminal so when we got the diagnosis we were absolutely floored. In retrospect, I'm glad that I didn't know anything about MND (or ALS as we call it in North America) before the diagnosis. I am grateful for that period when I thought my Dad just had a neuroligcal disorder but I wasn't sure which one. Every experience is different and everyone deals with these things however they can. There's really no wrong or right way so your husband not wanting to read anything about MND or even consider it may not be a bad idea. Channel all the positive thoughts you can and try not to let the worry consume you.

That said, I will keep you both in my thoughts and really hope that this all turns out okay!

Warmest regards,
Thelma

 

[Al]

Welcome Li. Sorry you had to come looking for us. Feel free to ask any questions or vent. The search feature above is useful as well. Take care.

AL.

 

[Limana68]

Thanks for your kind words,,,,,,,,,,,, I am trying to keep strong for my hubby, its so hard tho!
I will keep in touch and let you know whats happening. its nice to know there are people on this forum who understand what I and my hubby are going through.

Li

 

[lizzy]

Hi Li,
I am in a similar situation where my hubby has had many problems including speech issues for 3 years now. He is set to do testing for ALS & MND in 6 weeks time and the wait is hard. We have 2 young children too and I find it hard to find strength some days after 3 years of him not being able to work or be the person he was before. It's a tough road to say the least but somehow from somewhere you will find the strength and get through it. I wish you and your family the best outcome possible in this journey.
Lizzy

 

[Zaphoon]

Limana68,

The best to your husband! I am surprised that the doc has already said something about it probably being ALS, especially if that was on his first neuro visit. Make him really prove his case!

Zaphoon

 

[brendapals]

Hi Li,
I was diagnosed on 6/3/08 with bulbar onset ALS. My heart is with you and your hubby and I'm so sorry you had to find us. You will learn quickly that this forum will welcome you with open arms to anything you want to talk about.
Never give up,
Never let up,
Never lose faith,
brenda

 

[BethU]

Li, I'm so very sorry you and your husband are going through this. Your husband is blessed to have you there supporting him through this period.

I know how he feels about not wanting to know or read anything about mnd. I was the same way. It's enough of a strain just dealing with the symptoms and going through the tests. And the uncertainty can drive you mad!

I hope the doctors find a different answer, and that your husband will be OK.

Blessings,
BethU

 

[Limana68]

Thank you for all your kind words.
My hubby seems to be getting worse, his speech is getting slurrier and he coughs as if something is stuck in his throat.
He saw a relative today who he hasnt seen for months who was shocked by how much weight he had lost.
We are still living in hope that he has soemthing else wrong with him and not als............but I have a gut feeling it is- we are still awaiting his mri scan date which I hope will help them make a decision. Its the not knowing thats the worse thing!
I am not sure whether I shoudl make an appt with his doctor this week to get some more info, and his input. I am so worried that my hubby is wasting away!

Li x

 

[patricia1]

it will be a whiile before your husband will except what he has and go onto the forum.
it took me 5 years before I did.
Remember Denial anger exception Thats the order
I wish him the best

Pat 1

 

[Limana68]

Thanks Patricia
He actually looked the internet yesterday but wished he hadnt......... he is still praying that its something else.
All the best to you all xxxxxxxxxxxxxxx

 

[hopingforthebest]

Dear Li:

We are all so very sorry that you and your hubby are going through this disease.
You have found a great support team at this forum. Get your rest and know that others are thinking and praying for you and he.

Patty

 

[happy]

Hi Li,
Never give up,
Never let up,
Never lose faith,
brenda

Ditto....keep these words in your heart because sometimes the journey is long. But mostly try not to believe he has MND until you have a diagnosis as hard as that will be. Cherish everyday.

 

[patricia1]

happy :mrgreen:
I am so happy for you, But not surprised I never thought you had ALS

God Bless you
Pat