A year of tests & horror so far

[MarsyasWeeps]

Morning all. I'm new here but I've been dealing with a long period of testing where I've seen more machines and EMG needles than I knew existed. Umpteen normal tests and two sets of genetic tests and I'm now looking down the barrel of my final diagnosis on Tuesday.
I'm pretty sure where I stand as everything fits latest Bulbar Onset MND / ALS diagnosis by general neuro. Symptoms have been clear on voice since August 2020.
MNDA have been great so far. Palliative care and SALT all in place. More doctors than I can remember, and I've had epilepsy for 30 years.
I even have a plan of what I need to do, sort of.
Then I remember I have three teenage daughters and go to pieces. How does one grieve for a future one will never see? (rhet)
I'll focus on Tuesday and how I'll manage to speak at 4pm.🤐 Just thought I'd say hello and hope you and your families feel today is a good day.🙏

[richcrocker]

Hi and welcome. I'm fairly new here too but every one is lovely and very helpful.

I remember very well the tests and the waiting for the final answer. I can't make it any easier for you I'm afraid but what I found is that once I had my diagnosis and got over the initial shock I found it a lot easier to face up to the future challenges.

However you feel now or on Tuesday just remember you're never in this alone and there is always hope and a friendly forum.

keep your chin up

Rich

[PeterPan]

MarsyasWeeps Welcome to the forum and wishing you well for Tuesday. I don’t want to preempt anything, but I found that having a plan is really useful, with the aim of keeping one step ahead of likely needs. So well done! Hopefully it won’t be needed.

[matthew55]

Welcome. Been there, worn the t shirt and eaten the pie! Best group of people to be found anywhere on the www. Stay Strong 💪😁❤️🤗xx

[MarsyasWeeps]

Simply, thank you all.

[Ellie]

A warm welcome to the forum MarsyasWeeps

I'm now looking down the barrel of my final diagnosis on Tuesday.

Is this appointment with an MND Specialist?

Love Ellie xx

[LindaB]

MarsyasWeeps welcome to the forum...writing down questions before appointments really does help.

Take care 🤗😘

[Piglet]

MarsyasWeeps thinking of you for next week. It’s good you have things in place already.It’s such a shock initially but it really does get that little bit easier in time. I am a carer for my husband who is in his 5th year since diagnosis. Still walking and talking with slight changes but on the whole doing well.
This forum is the place to come when you feel you need to ask questions, cry, shout, and any other emotions that need venting.x

[richcrocker]

MarsyasWeeps thinking of you for next week. It’s good you have things in place already.It’s such a shock initially but it really does get that little bit easier in time. I am a carer for my husband who is in his 5th year since diagnosis. Still walking and talking with slight changes but on the whole doing well.
This forum is the place to come when you feel you need to ask questions, cry, shout, and any other emotions that need venting.x

reading about people who are years into a diagnosis is one of my favourite things and gives me the motivation to keep positive and as well as I can. It ain't over till its over x

[TinyLady]

MarsyasWeeps - thinking of you today x

[RP0521]

I'm new to this site and replying via my phone so please accept any typos.

Dispite months and moths of dealing with negative and jobworth people so many other organisations have been positive and supportive.

I've learnt to take a break from stress and tnen smile. Reducing stress levels is so important for our condition.

To take onboard that we are not unigue and that others are having similar in life issues is a relief.

Its not just about me it's about all of us regardless of a diagnosed illness.

[richard]

MarsyasWeeps I hope yesterday provided certain answers and was not too traumatic. Big hugs.

[keno]

I found it easier once diagnosed as I then knew where I stood.
this forum has a lot of advice and a lot of love from people who know what it is about.

[EvelynMW]

I aim to be one of the longest survivors of MND. And being positive, even medication driven, helps the time lengthen, and ones enjoyment of the time to increase.