Just saying hi

[SAMMY88]

Hi all, I was told a few days ago I have motor neurone disease . Need another emg test to confirm even tho its clearly obvious, I guess the nhs is just covering their backsides.

My symptoms started about a year and half ago. Fasciculations, cramps in legs. Then right foot drop. I constantly got let down by the nhs. Still now I haven't got my own neurologist just a temporary one, due to staff holidays / staff leaving and so on. I'm left with no help or support.

I would like to ask a question , how on earth to you find the strength to carry on. I can't eat or sleep there seems no point to me ?

Sorry for the negative post, just being real .

[WheelsOfSteel]

Hiya SAMMY88 and welcome to an exclusive club that nobody wants to be in.
Getting your head around such a devastating diagnosis is hard for anybody. You say you feel unsupported just now which may be down to staff shortages in this holiday season. Now that you have a confirmed diagnosis you will probably find that you are contacted by a wider team that will handle your care going forward.
Best advice I have heard is to focus on what you can still do, and not dwell on what you can't.
A day living with MND is still a day living.
Wishing you strength buddy. ❤️

[JamesW]

Hi Sammy,

Sorry that you find yourself here 😔

The diagnosis is devastating make no mistake but you can start to make some choices about how you want to live your life. In my case I’m trying to get the most out of every day and enjoy what I do have rather than focusing on what I’ve lost.

Take care

[SAMMY88]

Hi James, How long did it take you to start coming to terms with your diagnosis ?
Thank you for your warm welcome.

[SAMMY88]

Thank you Wheels of Steel, I'm still very much struggling. You all seem so positive in this group. I admire your strength.

[JamesW]

How long did it take you to start coming to terms with your diagnosis ?

Hi, I went to see my GP straight away and we had a good talk about the future, he had some wise words for me about my outlook and living with MND ……..it was along the lines of what I said to you above about your choices.

He also referred me to CBT which worked really well and I would thoroughly recommend to anybody suitable for it who struggling with their Mental Health due to this situation.

[SAMMY88]

Thats amazing to have a great GP. I will look into CBT thanks 😊. I haven't seen my Gp for about 3 years in person. I guess it depends on where you live in the uk unfortunately.

[WheelsOfSteel]

Hiya SAMMY88 This is a relatively rare condition - I heard the figure of 1 person in 300, so it can feel very lonely at first because you have probably never met anyone with MND before.
I found it very useful to engage with the MND community and hear from others who were going through the same thing as me. This forum was my first stop, and I also go to coffee drop-in sessions organised by the local MNDA branch.
Seeing how other folks cope with it can be a positive thing.
What area are you living in? I'm in Gloucestershire.

[SAMMY88]

Hi WheelsOfSteel, The coffee drop in sessions sound awesome. To met others in the same boat. I'm in Essex

[Ellie]

I was told a few days ago I have motor neurone disease . Need another emg test to confirm ...

Why tell you that you have an MND without being certain 🤔 seems a tad cruel... When is that EMG test scheduled for?

Were you in a specialist MND Centre? xx

[MMG]

Like you my husband and I couldn't see any positives in the future following diagnosis. We experienced an overwhelming loss over our future and let ourselves fall into a deep dark hole.

It took about 6 months to emerge from the pit.

With the benefit of hindsight, and now going through the end stage of this dreadful disease, I wish we had embraced the positives of what we could still do for those 6 months and done more than we did. We did go on a couple of holidays and had a lovely time, but by then he was in a wheelchair.

We read everything we could about MND and worried about them happening, the one piece of advice is that not all of the symptoms happen to everyone so don't focus on them too much.

As others have said, focus on what you can do now, and do as much as you can.

Good luck with your MND journey - there is still fun times ahead. xxx

[Cinderella]

Hi SAMMY88 - I can truly empathise as I too lived in Essex - I recognise the lack of access to doctors and just getting an appointment to see a neurologist - in over 5 years I actually saw one in person and had one solitary phonecall. I had the same symptoms as you but they kept saying there was nothing wrong. It's so frustrating. I'm only diagnosed now because I moved to a different area.

I was told bluntly whilst still recovering from an op that I had mnd, I was on my own and was left to tell family myself - there was no support. Like you, the confirmation was much later - not until around 2 months after when I saw the neurologist for the first time. They have apologised since.

We can't change what is, we have to find a way of accepting it and then dealing with it - it doesn't stop me everyday I wake up saying I have had enough, recently losing my husband to covid, then having kidney cancer, then this - but there are still things to enjoy - I never learned to drive but now have a scooter - it can be such fun to use and keeps your independence, I still work as can type and because of covid, was bought a laptop to work from home, I've just come back from a short break - they have roll in shower and wheelchair access, I went into the pool with the aid of a couple of noodles for support and it was lovely - I even met an old flame and he said he was still attracted to me and called me a foxy lady!

If you can find the motivation, getting out really helps - just enjoying nature (I recently went out at midnight to watch a meteor shower in the middle of the New Forest), hiring a tramper to go off road on forest trails at country parks or going to see a show perhaps, there are often carer's packages so someone can go with you at no extra cost. As others have said, focus on what you can do, not what you can't.

If it helps you feel proactive, then sign up for research for example - I have just finished one that was in forum style and it is being used to provide insight to the professionals - it was so good to read other's experiences/points of view - a bit like this forum but with specific questions to answer.

This opportunity came via our local branch mnd (the same as the coffee drop in) if you go to https://www.mndassociation.org/suppo...port/branches/ you can find out the contact details of the two branches in Essex.

There's also a quarterly magazine you can view online www.mndassociation.org/thumbprint

xx

[SAMMY88]

Hi Ellie , I had an emg test at the beginning of August. After the test the lady said she knew 98 percent what condition I had, she had only seen 2 other people with the same condition, then said I'll be seeing you again but then refused to tell me what I had. I spend another 2 weeks chasing my results. My daughters had to complain, finally got an appointment with a temporary neurologist who informed me they strongly believe I have motor neuron disease but need a 2nd emg test to confirm it in about 6 weeks time.

[SAMMY88]

Hi MMG, Its so hard trying to stay positive, the part where you say you read everything about MND and worried about them happening to you, thats what I've been doing lately. I'm stuck in the stage of its so unfair, ive tried to look after myself by keeping fit , eating the right things then i get this horrible disease . This rare disease unbelievable unfair.

[SAMMY88]

Hi Cinderella , The nhs is shocking at times, to treat people like this makes my blood boil. Like you i try to enjoy the countryside, the sky at night while riding my mobility scooter my kids bought me. I was thinking about signing up to some research, thank you I shall look into it. Wow you have certainly been through alot. I'm so sorry you lost your hubby then cancer and now this horrible disease. Life is so unfair. I truly admire you ❤️