Suspected to confirmed diagnosis

[Zante]

I want to really thank everyone for your support and advice and help. This forum really is incredible and the people on here. Thank you so much. I am about to phone my insurance company and download and complete the dvla form. Already I have had contact from various mnd services for my area and referrals have been done for everything that they wanted to do. Its all been very impressive and fast and I don't now have the worry of care going forward based on today's calls.... really hope the positive start continues. Its all as mentioned on here quite overwhelming and I am purposely going to have things spaced out time wise for me to manage. Yes only upper motor neuron involvement at moment but last emg was 6 months ago and am twitching often but I am not in a rush for a repeat emg as am afraid to know about lmn involvement so ignoring it for now as much as possible.
I wanted to take this opportunity to thank all on here and to say really that the connection and community togetherness here, the friendships and support really is so amazing and for everyone to know that. It's somewhere I never wanted to be but it's a forum that is so accepting and non judgemental. Huge hugs to all. Xx

[AngieCanuck]

Zante I’m sorry to hear about the confirmation of MND. I too find myself in denial of my diagnosis. I often feel like it’s not real and that can sometimes be detrimental when I try to do something and find that I struggle. I think the most difficult thing is constantly having to adapt to change, as abilities are always in decline. Are you still UMN dominant or have things progressed to LMN too?
I am getting a knob on my steering wheel, with my OT’s assistance, so I can continue to drive (albeit only short distances). My right side is still unaffected, but cramping has begun in my right leg so I’m not sure how long it will work.
Sending hugs across the pond!
Angie ❤️❤️🩹

[Olivia H]

Sorry Zante that your diagnosis has been confirmed. I would add onto what most people have said, you do feel shock, denial, a bit overwhelmed, and if there are lots of appointments, you can feel your life is not your own. Just deal with things slowly and steadily, dont be rushed. I spent a year waking up and thinking...oh no, I have mnd. But gradually you stop thinking that, and if you can adapt and use things you need to help you feel you are still 'yourself' and adapt, you can live with it, especially if yours is slow progression.

My progression was initially fast, but only with my walking...from cramp in legs/leg pain to footdrop and needing to use a mobility scooter for anything other than a very short distance, within 5 months. But....10 years on, my legs and balance are weaker, and I get tired, but otherwise nothing has changed, still use arms/hands etc, breathing and eating ok.

I try to read all the positive things (ALS Untangled, Patients Like Us) and there are people going strong 20+ years on. My Consultant said, in her many years working with mnd patients, people who stayed positive did so much better.

However things go for you, there is so much support and shared experience here xx

[Madge]

Hi Zante it’s a hard decision to know when to give up driving and to accept the decision but we all have to be safe. I had a new license issued for 3 years but I can no longer drive and this license has now expired as well as my passport. Be safe and listen to your body , all the very best.

[Heather R]

Zante sorry about the confirmed diagnosis. I too live on my own now, so was keen to be able to drive where no public transport, and when I became unable to cope with getting on a bus. My legs worked at diagnosis, and now nearly 2 years later, despite on a ventilator most of the time, and feeding through a PEG tube, my legs still work, though weaker. I told dvla my symptoms (bulbar) and they renewed my license for 3years. My neurologist said what matters is if I my legs aren’t strong enough to slam on the brakes in an emergency, and my arms and hands strong enough to pull the steering wheel over sharply in an emergency. I gave up driving a few months ago, a sad step, but other people take me out and I am trying taxis that take wheelchairs. All the best to you on your mnd journey , glad you have joined with us on the forum x

[Zante]

Thanks for the replies. Really pleased to read that car insurance companies can't just increase your price because of having a notifiable condition. I seem to have turned into a plodder so probably safer on the roads now than ever before!! Thanks everyone.

[shelly21]

Zante I'm so sorry re the confirmation. Like others have said its a huge shock. Xx

[MMG]

We advised DVLA immediately following hubbies diagnosis in April 2021. We had a number of letters saying due to COVID, decisions were delayed but he could continue to drive in the meantime. My husband has recently been told by DVLA that they will allow him to continue to drive but review every year. He is now completely immobile and cannot move arms or legs, but certificated as safe to drive!!!! Don't know if thats a reflection on the DVLA medical information or on the neurologist advice who had only had two five minute telephone conversations in the last 12 months.

He obviously doesn't drive, we sold his car and I have had him taken off my car insurance.

[John D]

[QUOTE=Zante I will contact my insurance company and dvla once I have seen the mnd nurse next week. You would think there were more things to worry about but I am hoping it won't make the car insurance premium jump in price cos I only just renewed and it was expensive enough!]

Car insurers can’t penalise you just for having a notifiable illness which would constitute disability discrimination.

I have had my licence renewed twice now. Neurologist does just answer DVLA questions for them to make the decision. I got a reminder that they were still waiting for neurologist’s response after end of 1 year renewal period and could I remind him but went on to say they realised doctors were busy dealing with pandemic issues and licence would continue until he had responded.

I have just sold my car since it wasn’t getting much use and hoping my wife will let me drive hers but probably only when she’s with me which defeats the object of the exercise really! By the way, I sold the car via Motorway.com which I would recommend trying. They got me a really good price. Their site is ingenious and relatively simple to use.

[Zante]

PeterPan thanks I shall have a look tomorrow when not so tired. Thank you.

[PeterPan]

Zante This may all sound a bit theoretical, but a psychologist called Elizabeth Kubler Ross did some research and came up with ‘the change curve’. Shock and denial are the first response to s devastating change, then some anger and frustration. Don’t worry, acceptance comes a little later. Plenty of info online information about Kubler Ross. Knowing the theory does make things easier. Hope it helps

[Zante]

Claireflo thanks so much. Best wishes for your dads birthday next week. I also only drive short distances. The main one is my daily trip of 4 miles to the Moor to walk my dog off lead so want to hang onto driving for as long as possible. Thanks x

[Claireflo]

Hi Zante, whilst it may have been a suspected diagnosis for some time, actually having it confirmed would still have been a shock.

My Dad has bulbar onset so is still mobile and, while other aspects are difficult for him, I'm grateful he has his mobility.

He's 70 next week so has had to renew his drivers license. He filled in a form online and the DVLA said they would write to his consultant. She was very quick to tell us that she just answers the questions and the DVLA make the decision. She did however say she didn't see why he couldn't continue driving (despite having very weak neck muscles at the back of his neck which means he needs to wear a neck brace). Dad is understandable keen to continue driving while he feels it is safe to do so, he only drives short distances.

I hope the appointment next week will help answer some questions, give yourself some time for it to sink in and to adjust to it being confirmed.

[Zante]

TinyLady yes i understand everything u have said thanks and can relate to not feeling unwell enough or poorly enough. I suppose its also varied on how early it's been diagnosed and how slow or quick the changes happen.
I will contact my insurance company and dvla once I have seen the mnd nurse next week. You would think there were more things to worry about but I am hoping it won't make the car insurance premium jump in price cos I only just renewed and it was expensive enough! My arms feel tired if I hold the steering wheel in the 10 to 2 position but not as much further down.
Big hugs and thanks xxx

[TinyLady]

Zante - so sorry to hear how your diagnosis has been confirmed.

I was told to do an online DVLA form immediately and my cleaner ended up phoning my car insurance for me. I did the form in January and had a letter confirming. I do still drive (automatic) but rarely now and it is getting harder. My left arm gets too tired to grip the wheel after a while.

As for denial. Well, I was misdiagnosed for years and when I did get the diagnosis I still feel like maybe I'm a fraud or imagining it, or not bad enough. Which is crazy when my logical head is on. But I think I wasted so long thinking it was nothing. Then it was something so serious I still don't think it has sunk in.

I know it sounds daft, but when I have my doubts I do things like try to move my left foot or spread my fingers. It makes me realise I'm not imagining the very real changes. But then it is scary.

I hope you gradually settle into this like I have. But it did take time and I still think maybe I'm wrong or an imposter.

Sending hugs xx