Drumroll please......

[SAMMY88]

Yessssss I finally have an appointment booked for next week at the National Hospital in queen's Square mnd clinic, for my 2nd opinion . It's been a long hard wait for me. Fingers crossed 🤞 for sma 4 or pma slow progression. I know a girl can dream.

For those of you that's been for a 2nd opinion, what should I expect ?

[Zante]

SAMMY88 well done on getting a second opinion appointment.
I think everyone's experience has been quite different.
I had a second opinion in August. It was the most thorough clinical examination I ever had and the appointment was almost 2 hours with an mnd specialist consultant.

She went through my recent neurology notes but to be honest mainly she listened to my history from myself and how I had noticed body changes and difficulties. She asked a lot of questions and also asked my family member who came with me what she had noticed and when..

She then went into a lot of detail about what mnd is and the 4 different types and explained how at this stage I had the upper motor neuron and not lower but also indicated how this often changes and the chances of this happening.

Needless to say she confirmed mnd. But her approach and bedside manner was so lovely she is now my consultant as I changed.

She wrote to myself and Dr and I am due to see her in a couple of days for my first mnd clinic appointment along with respiratory, mnd care coordinator, neuro psychologist, palliative care doctor. Am so nervous about this appointment.

But having the diagnosis confirmed stopped me continuously researching what else it could be. As devastating as it is. I no longer search for answers and hope for something else . I used so much time and energy second guessing it all.

I hope it goes well for u and u have someone who is as thorough and kind and approachable as I had. X

[Ellie]

I finally have an appointment booked for next week at the National Hospital in queen's Square mnd clinic, for my 2nd opinion .

Woohoo!

This is from their website, so hold them to it 😏

“Our clinic is supported by the Motor Neuron Disease Association (MNDA) and the essence of our service is to provide a relaxed and calm environment to enable prolonged, careful and frank discussion.”


What to expect? To be listened to, for starters, and answers and next steps, whether you get a diagnosis or not next week.

My 2nd opinion was a straightforward confirmation of ALS after a clinical exam. The Professor had reviewed my file and tests prior to my appointment.

Bring your list of questions and take notes. Bring somebody with you.

Needless to say, I wish you the very best. xx

[SAMMY88]

Zante Thank you, Hope I have the opportunity to fully explain my history xx

Ellie Thank you, my husband and son are both going with me. Father in law is lending me his wheelchair for the day . Xx

Its interesting that both of you didn't have any further emg tests, i thought that was the point of the 2nd opinion, but it will be great to see a MND specialist to get their opinion and things actually fully explained to me.

Good luck on you 1st mnd clinic Zante xx
ps I hate that word... luck ...now .

[Ellie]

Its interesting that both of you didn't have any further emg tests, i thought that was the point of the 2nd opinion,

My EMG was unequivocal - the 2nd opinion was primarily because of my age. xx

[SAMMY88]

Ellie, You was so young when 1st diagnosed, late 30s I believe. If you don't mind me asking, do you have genetic mnd/als ? Xx

[AngieCanuck]

My 2nd opinion included a 2nd EMG. Dr confirmed MND and PLS initially. That was in March last year. Then in September, 3rd EMG by my original neurologist and ALS diagnosis. My 2nd opinion was rather negative, dr said I’d likely develop ALS eventually. Unfortunately, he was correct 😑 and 6 months later my initial probable PLS shifted to ALS. Now I’m finished with EMG at least…

[SAMMY88]

AngieCanuck, so sorry to hear your diagnosis changed from PLS to ALS that must have been tough xx

I suppose it depends on your personal case if you get another emg test. I would like one more emg test tho, just to make sure.

My son is worried that I'm hoping to much for good news , he doesnt want me to crash again mentally.

[Claireflo]

Well done on finally getting the appointment for your second opinion SAMMY88, I hope you get the best news possible. It's natural of your son to worry because it is such a hard thing to have confirmed but hopefully the second opinion will provide a clearer diagnosis one way or the other rather than continuing to feel uncertain as to whether it is or isn't.

When my dad first went into hospital as he was choking when eating we were told he didn't need an EMG for a diagnosis, however I said he'd been told it was needed to confirm the diagnosis and without it he couldn't access the support so they did an EMG.

Zante I hope your upcoming appointment goes well. Its great that you'll get to see all the different areas although I expect it will very quite a draining day x

[SAMMY88]

Claireflo Thank you xx

[Ellie]

Ellie If you don't mind me asking, do you have genetic mnd/als ?

Nope, all my own doing 😁😁😏

[Ellie]

I am due to see her in a couple of days for my first mnd clinic appointment along with respiratory, mnd care coordinator, neuro psychologist, palliative care doctor. Am so nervous about this appointment.

It's understandable that you feel nervouse for your first appointment Zante, I was too.

It can be a full-on and long few hours, so bring company, a book or download something to watch (with earphones), that way you don't need to see what's around you... xx

[Zante]

SAMMY88 I don't know if a repeated emg for a second opinion is standard or not. She offered to refer me for another repeated one every 3 months to see if its changed to als, however i declined. I would rather not know. And she said it wouldn't change what support and medical team I have.

Ellie thanks and Claireflo for the best wishes. It's tomorrow afternoon. I was advised it could be 3 plus hours. I struggle in hospitals but this is a new clinic in another site so should be better. I don't know what to expect from the first appointment with the palliative care Dr. I am taking my mum but would like to see palliative care alone incase its very upsetting. Going to download something on iplayer thanks for that. Xx

[Piglet]

SAMMY88 good luck for next week.xx

[SAMMY88]

Piglet Thank you xx