Forthcoming appointment!

[Frenchoak]

I've an appointment coming up 25th Sept, with a Neurologist from the Movement Disorders Clinic which I was referred on to by the original Neurologist I was seeing last year. I've mixed feelings about attending as bit of me thinks 🤔 what's the point! He won't tell me anything new! I can't think of any questions I should ask.....so I'm looking for inspiration to help me make the best possible use of the appointment please! Any suggestions 🤔 thanks.

[esj20]

Hi There,

write everything down and take freind relative in too incase you forget to ask anything or discribe your symptoms.

Have you had DAT scan yet?

Alec

[Frenchoak in reply to esj20]

Yes, my husband always comes with me to appointments as an extra pair of ears, and as scribe as my writing is so difficult now. No I haven't had a DAT Scan. What do they show? 🤔

Thanks , hope you're doing OK

[esj20 in reply to Frenchoak]

Hi French

Ive taken the following fron the British Nuculear Medicine Society:

DAT stands for dopamine active transporter. Dopamine is a chemical which is important in areas of the brain that help control movement. A DAT brain scan is a nuclear medicine test that looks at the function of dopamine transporters in your brain. It is often used to help distinguish Parkinson’s disease from other causes of tremor or difficulties with movement.

Once i had this it wasnt long before i was given the working diagnoses of MSA,

I hope you are doing OK too.

Alec

[Frenchoak in reply to esj20]

Thank you for the info. I went through the process of diagnosis last year April-november, and a DATScan, nor Parkinson's for that matter, was never mentioned at all, just MSA-C . .....I guess they could see from CT and MRI scans it was MSA-C already 🤔 as a letter from that 1st Neurologist said they could see a cross-like structure (hot cross bun sign) on scan, so I suppose they didn't need to go down DATscan route if they're thinking possible /probable MSA-C . it's all sooooo complicated isn't it!! How you coping in this heat? 🤔 I keep overheating & can't cool down, it's overwhelming. Guess that's my thermostat starting to pack up! Joy!

[Gill-C in reply to esj20]

I always go to everything, even if it seems like a duplication. It’s a strategy that has so far resulted in a lot of specialist assistance!

I don’t know how MSA presents for you right now and which symptoms are your major concern, but you might want to consider asking for referrals to eg neurophysio and/or speech and language therapy. (The sooner one joins waiting lists the better).

Good luck!

[ReverendBadger]

SUGGESTED QUESTIONS;

are any further tests planned#

is any part of the diagnosis uncertain

which syptoms can be managed and how

will a MDT be involved

which specialist will I be seeing and when

will I have contact with./referral to the local hospice

is counselling available

what practical help will I need short/medium/long term and who will provide it

[Frenchoak in reply to ReverendBadger]

Thank you, some very useful comments there, avenues to be explored at appointment 🙂👍hope you're going along OK too

[Janeyl]

The MSA Trust have a useful fact sheet on this:

msatrust.org.uk/wp-content/...

[Frenchoak in reply to Janeyl]

Thank you, this is useful 🙂👍