CUE1+

[Jack52Harry53]

Am interested in feedback from anyone with MSA having tried out the CUE1+ device currently on the market as advertised being useful for those with Parkinson’s.

Kind Regards

[Soco74]

No, but thanks for the info, I've just been on their website at charconeurotech.com/healthc... and downloaded a broacher, it's a very interesting device, if it works. And for us who have MSA-P there shouldn't be a reason why it would not work. I'll make some enquiries with them.

[Jack52Harry53 in reply to Soco74]

Thanks for your response. Our MSA nurse is sceptical but in situations like this anything is worth an effort. Believe the device sells for ~ £750 ish.

Good luck

[Soco74 in reply to Jack52Harry53]

Check this BBC article out, It's where they are currently at. I put myself on the list to get one and two days later they informed I was able to buy one. I think I'll Waite for the results of any trials before I jump in.

Regards

bbc.co.uk/news/uk-england-c...

[Gill-C in reply to Soco74]

That is interesting. Thanks so much for sharing the link. G

[Jack52Harry53 in reply to Soco74]

Thanks, will check out

[Gill-C]

I had not heard of it, but had a good look following your post. Thanks very much.

I emailed them and they said there is now almost no waiting list in the UK, but the device is as yet untested for MSA patients, although they are hoping to expand their research to us in time.

Personally, I can’t see why it would do any harm, except to the bank balance! However, I thought I might check for contraindications with the consultant on my next MSA appointment (which unfortunately isn’t until next year).

it would be very interesting to hear from an MSA patient who has actually tried it for Parkinsonian type symptoms

[Jack52Harry53 in reply to Gill-C]

Thanks for your reply. As you say nothing to lose except the money.

Good luck

[Terrier58]

my husband tried it for a few months a couple of years ago and found it made no difference to his MSA C symptoms but he was the first person with MSA to try it and they were trying to gather more data so he also felt he was helping with the research. Its non invasive and as each person responds differently to it, other than the cost, there is little to lose by giving it a go and seeing if it works for you

[Gill-C in reply to Terrier58]

Many thanks for sharing this. Did your husband have any MSA-P symptoms at the time of the trial and, if so, was there any impact on those?

[Jack52Harry53 in reply to Terrier58]

Thanks for responding. Good luck for the future

[Blueym00n]

Hi

I tried it in early 2023 when I was still under a PD diagnosis. It did not work for me. They gave me a full refund. I was subsequently diagnosed with MSA-P later in 2023.

[Jack52Harry53 in reply to Blueym00n]

Thanks for reply…that’s exactly what we think re usefulness of the device. We have a MSA-C diagnosis here, symptoms starting around 2019. Good luck whatever you try/do in the future