Clinical Trials

[esj20]

Hello

Just wondering if anyone has considered clinical trials?

I volunteered for this one

vbepartofresearch.nihr.ac.uk...

One more visit then back in a year's time to repeat again, the information is on the MSA webpage.

Truthfully it may not benefit us but it may help future sufferers further down the line.

The study team are amazing and really look after you.

Yours

Alec

[Gill-C]

Yep! I agree. Being part of a trial kind of makes you feel like you have taken back a tiny bit of control by using your MSA to contribute to the future in some way. Be prepared for “withdrawal” symptoms at the end or if you don’t get through screening though!

[Gill-C]

sorry - just wanted to clarify as my previous reply was done in a rush waiting for the vet! Don’t want to put anyone off participating in trials!

By withdrawal, I didn’t mean from drugs, administered or anything similar. I just meant the change back to normal after having had frequent appointments and attention. 😊

Cat feeling sorry for itself after trip to vet.

[esj20 in reply to Gill-C]

Yes, i can understand as during my visits to London, they treated me like royalty !😆😆😆

(hope the cats ok)

[Monkeyfeet1]

MSA-p and must be able to walk 10metres unaided. I was looking forward to being treat like a princess 🤣

[esj20 in reply to Monkeyfeet1]

I can shuffle 10m with the aid of crutches, depending what type of day i'm having. And now you mention it i don't actually know which type i have as my symptoms appear to span both types! (maybe i'm that bloody lucky i have both!)

It maybe worth contacting them to enquire, it's nothing too uncomfortable and the lumbar puncture is optional!

So, worth asking as being a Princess for a day, or four, could be waiting!

[Monkeyfeet1 in reply to esj20]

I will do! Thank you 🙏🏼

[Kaye31]

yes we have just completed Exenatide trial in UK.

A year of drugs now over and back in a year.

Good luck

[Frenchoak]

Hi esj20, I am taking part in the same research study as you I think 🤔 Synaptic Loss in MSA being carried out by University of Exeter, but scans etc are carried out by Invirco at Imperial College London. I've been to London 3 times this year for tests and PETscans & MRI, but I didn't fancy the lumbar puncture so opted out of that! Visits to be repeated again next year. It's been a good experience and I'm pleased I can do something positive for helping people in the future. They are still looking for more participants if anyone is interested.