Upcoming appointment nerves

[AngieCanuck]

Hello everyone,
I’ve got my appointment at the ALS clinic in 2 weeks. Feeling overwhelmed and nervous. I feel like things are worsening…I am now having issues with choking on my saliva on a very regular basis. Loads of extra saliva that now leaks down the corner of my mouth and coughing. All part of the territory, right…?
Any tips/advice for my first visit?
Angie

[Johnny5]

Make a list of your questions to take with you. For some reason, folks tend to forget all the questions. It is like a deer on the road at night when it see's your headlights.

[Maria C]

AngieCanuck do you have someone to attend the appointment with you? A second set of ears will help keep all the info straight. Definitely have a list of questions. Are you expecting a definitive diagnosis at this appointment or are they still waiting?

It is definitely overwhelming when symptoms feel like they are getting worse. Get referred to Home and Community Care Support Services. You’ll have access to a PT and an OT. Every bit of expertise you can access is going to help over the long haul.

I actually got out of the house today to enjoy the lovely warm weather. Hopefully we will have more of those days now.

[PeterPan]

AngieCanuck Best of luck. I take two copies of an ‘agenda’ with me - a well spaced, typed list of topics I want to cover. My experience so far is that the neurologist will happily grab the piece of paper and use it to cover everything I’ve thought about over the days before the consultation. They also cover the things they want to expand on too. Works for me.

[Lcfcno1fan]

As people have already said, get somebody to go with you and write down your questions beforehand. The clinics I attend are very relaxed and they always make plenty of time for the appointment (one hour). Also I have email access to my MND Nurse who is always there to field questions I may have in between clinics.

Good luck, James x

[richard]

AngieCanuck You have had some wonderful advice here. For me the most important is the second set of ears and two lists of agenda. You never want to leave and then think “I forgot to ask …..”

As for being nervous, we have all suffered that. It’s easy to say but worrying in anticipation will not help. As is often said in this forum “ Take one day at a time” and as MaryC often said “ And give thanks for another day”.

[AngieCanuck]

I had my appointment yesterday at the ALS clinic. It went well, with my Neurologist “diagnosing” PLS. He is arranging another EMG for next week with another MND neurologist to confirm that I only have UMN involvement. I’ve got an OT coming to my house to do a mobility assessment and I’ve got a swallowing test coming up for the choking on saliva/water issue, drooling issues.
I have excruciating pain in my jaw…hurts to chew and open my mouth. Is that something that anyone else experiences or unrelated?
I feel very thankful that it is just PLS right now. I am inspired by everyone on this forum, and grateful for all of you.

Angie 💕🌻

[Ellie]

In the grand scheme of things in the MND world, the absence of LMN involvement is a really good thing, long may it last 👍👍

I have excruciating pain in my jaw…hurts to chew and open my mouth.

Did the Neurologist have any idea what's causing it or has the pain just come on today?

Jaw pain isn't unusual but for it to be "excruciating", is more unusual. I wonder if your jaw is out of alignment? I often get sharp pain on (hippo) yawning as if the joint isn't fully aligned, but I can manoeuvre back into place. I also get spasms occasionally but it isn't particularly bad pain either. You should have it checked out.

I have everything crossed for you that your EMG shows no LMN involvement 🤞🤞

There are meds which reduce the amount of saliva produced, if necessary, or Botox injections into the salivary glands. 😘

[TinyLady]

AngieCanuck - glad the appointment provided answers and I believe PLS tends to be slower progressing. I have been told mine is ALS, but UMN dominant (PLS was ruled out) and my progression may well be slower than typical, which I took as better news.

I hope you get timely support as you need it xx