Unsure what questions to ask - first appointment with MND consultant tomorrow

[Worsleybird]

Hi all,
I am a 59 year old women, in previous good health, just a sore neck for many many years due to bad posture and mild whiplash some 30 years ago, developed slurring in March this year just after 1st Covid jab (unsure whether this is a coincidence). Because I work in customer services reading endless scripts on the phone non-stop for 8 hours for over 4.5 years I just thought I had strained my vocal chords. But it did not clear up and I was referred by my GP to A&E for a CAT scan due to a suspected stroke. I didnt have any other symptoms apart from the slurring. I saw the stroke A&E consultant who thought it might be pseudo bulbar or bulbar palsy but I needed referral to a neurologist.

Went private due to 25 week waiting time (horrendous for Neurololgy here) and was told by that consultant it could be MG, or either or the two above. Had a nerve conduction study and another appointment with a NHS neurologist beginning of this month who basically didnt seem interested in the nerve conduction study and just brushed over it so I've no idea whether it was bad or good.

He then said he thought I was a ''possible/probable'' MND patient and had a MND nurse in the room when I went to see him. He has perscribed Riluzole 50 mg twice a day. I don't know if its pyschological but I keep getting some a single flicking type sensation in muscles in my arms, legs and chin and today have saliva problems but it feels like my glands are up on the left hand side of my neck. Its as if now I know I must have this I am seeing and feeling other things.

I don't have any muscle weakness but obviously am very very frightened of what is going to happen tomorrow when I have the first MND appointment with the MND consultant. The previous neurologist sent away bloods and I had a 2nd MRI with contrast a couple of weeks ago.

Plus to cap it all I have a 60th birthday cruise booked with friends in February 2022, where a large balance is due in November this year and I just don't know whether I should cancel it. The thought of sitting on an 8 flight drooling, in a wheelchair, or with all the associated difficulties is too much to contemplate. I just am not brave enough to go through with it or put others through it.

Theres a lot here to comment on, but Im up for any help on what questions I should be asking my neurologist tomorrow ?

[matthew55]

First things first and that's take it one day at a time. Don't cancel anything as no one can tell what the future holds. By rights I will be dead by this time next year but am I worried? No. 👍😀😁😍xx

[Deb]

Hi Worsleybird and a warm welcome to our friendly forum.

I am so sorry for your diagnosis.. its such a shock and the early days are overwhelming. If you have the support of an MND nurse they can help you through the first neurology appointment.. I needed this as my mind just went blank ! Its a good idea to make a list of questions .. they will be used to this and don't be afraid to ask anything at all.. questions relating to travel are important !

As Matthew says be cautious about cancelling anything.. noone knows what the future holds and people progress at different speeds. Although I can't weightbear we have continued to fly , covid permitting, and I have found the special assistance on airlines to be discreet and professional. Yes its a hassle but its worth it !

Take care of yourself,
Love Debbie x

[PeterPan]

Hi Worsleybird,

The first thing you probably know I’m going to say is try not to be ‘very very frightened’ of what’s going to happen tomorrow. I don’t imagine anything will happen except that a super-qualified neurologist is going to spend some quality time with you to explain what’s going on. I’d suggest that you jot down a few questions on paper today and then be prepared to listen very carefully, ask a few questions, and listen carefully to the answers.

From what you’ve said, it’s not fully confirmed yet that you have MND. If that could be cleared up tomorrow that would be a good start.

If you did get a diagnosis of MND (and I do hope you don’t) it’s really not the end. It’s just the beginning of something different, and nothing will change quickly. I agree with Matthew, don’t cancel anything yet (do you have travel insurance by the way?). It’s a long time until November when you need to make a final decision. Everyone is different and, if you did have MND, many people can still do many things for longer than they imagine. I’ve been diagnosed almost a year and I’d certainly be able to go on a cruise…. I’d go tomorrow like a shot! I would need a bit of extra support, but nothing I’d be embarrassed to ask a friend to do.

You’ll get plenty of great support from others on this forum. Come back and tell us how you get on, and I do hope it’s a useful first appointment. Best wishes.

[Ellie]

Worsleybird A warm welcome to the forum.

Went private due to 25 week waiting time (horrendous for Neurololgy here) .... Had a nerve conduction study and another appointment with a NHS neurologist beginning of this month who basically didnt seem interested in the nerve conduction study and just brushed over it so I've no idea whether it was bad or good.

He then said he thought I was a ''possible/probable'' MND patient and had a MND nurse in the room when I went to see him.

May I ask: it's unclear who did the nerve conduction study - private or NHS Neurologist/Neurophysiologist - and did you also have an EMG (the needle one)?

As for tomorrow, if it's confirmed that you have an MND, you should ask how do they know, what type of MND you have and what happens next.
Don't be afraid to take notes during the appointment and preferably bring someone along with you.

If your preliminary diagnosis is confirmed, we're here for you 🤗

Love Ellie.

[Mmsm]

Worsleybird I was diagnosed one month ago with bulbar onset MND/ALS.
Everything happened one week after the first jab too.
For my experience all my questions just fly away when the neurologist confirmed. The best thing on That day was my partner Went with me.
The question after all the cry and confusion was
(what's next step?)
(how long in my case?)
All the other questions wasn't important any more on that day.
Take someone with you, the rest you can resolve after.
Not cancel nothing. No matter what is your diagnosis. You should enjoy your time. We never know when the clock will stop.

[LindaB]

Worsleybird welcome to the forum....as you can see lots of great people here with practical advice & suport. I can't add to that....but will say try to take one day at a time....good luck 🙏

[Gordan1111]

hello Worsleybird - agree with everyone else. Take someone with you and take a pen and paper to make notes. Perhaps mention holiday and ask neurologist their opinion. If diagnosis confirmed could also ask about clinical trials. x

[Lynne K]

Hi Worsleybird - welcome. I agree for you to make notes for your appointment with the neurologist tomorrow. It is scary at the beginning but as most of us say take one day at a time. Love Lynne x

[aussiegirl]

Hello Worsleybird, so sorry you have this worry. When you visit the specialist, ask if you can record on your phone, I know I wouldn't have been able to write everything down. My EMG was actually quite an important part of the diagnosis, so I would be asking the results of that. Good luck, and I hope you don't have to join us.

[Mary C]

Hi worsleybird
when I was diagnosed a year ago my daughter came with me.We had made a list of questions as I knew it was MND after nerve conduction tests showed motor nerves were affected.
My daughter also recorded our meeting on her phone with the neurologist .We asked for a copy of the report he would send to GP and the report included the contact details for who he referred me on to for support ie, MND nurse, local hospice etc.
Best of luck
Mary

[Worsleybird]

Hi there, thank u so much for taking the time and effort to respond to my post. It's really comforting to know this group is here if and when needed. Will report back this afternoon and have taken notes of all your suggestions x