Nuedexta

[Jacquij]

Hi Guys,

I wonder if you can help. My MND Consultant has advised that I might benefit from Nuedexta, however this is not available in the UK. He has advised I contact ALS Worldwide. Unfortunately the contact form does not work on their website, and although I have messaged them through Facebook I have not had an answer. Does anybody have experience in obtaining Nuedexta and does anyone have a contact email address with ALS Worldwide.

With many thanks

Jacqui

[Ellie]

Hi Jacqui,

Strange you didn't get a reply through FB. You can try emailing Barbara Byer on [email protected] as she is mentioned on their website as having helped other Europeans get generic Nuedexta from the US.

I'm nearly sure Barry here tried it for a while, with ALS Worldwide's help - hopefully he'll post soon.

Good luck.

Love Ellie.

[Jacquij]

Thanks very much Ellie, perhaps Covid is having an impact on them.

[Barry52]

Hello Jacqui,

Ellie is indeed correct to recall that I tried Nuedexta. I had a video call with Barbara Buyer who arranged supply of the generic form of the drug. A 2 month supply cost me approximately $175 after shipping and import duty. I took the drug for around 2 weeks but I found it was affecting my balance so I stopped taking it and put it down to an expensive mistake. This happened around 3 years ago and my consultant was aware.

Best wishes,
Barry

[Jacquij]

Hi Barry,

Thanks very much for the info. Can I ask did you have it for lability of mood and if so did it have any affect on it.

[Barry52]

Hi Jacqui,

I already take citalopram which has some benefits with lability and mood for me. I had hoped that nuedexta would improve my speech as reported by some users but the trade off affecting my balance was not worth it. Having said this, 3 years on and I fall over if I am not using my walker. I still count myself fortunate that I am able to adapt and use aids to to manage life with disabilities.

I hope you find something to improve your situation .

Best wishes,
Barry

[miranda]

Hi Jacqui,

I already take citalopram which has some benefits with lability and mood for me. I had hoped that nuedexta would improve my speech as reported by some users but the trade off affecting my balance was not worth it. Having said this, 3 years on and I fall over if I am not using my walker. I still count myself fortunate that I am able to adapt and use aids to to manage life with disabilities.

I hope you find something to improve your situation .

Best wishes,
Barry

I don’t believe it!!! Barry I can’t believe you are still breaking the “no falls allowed “ rule by not using your walker. You will no doubt get another telling off - only because we care and don’t like to see anybody take unnecessary risks. Please be careful.

[Ellie]

Well, I've given up scolding Barry for falling over He's just a scoundrel...

[Barry52]

Okay ladies, guilty as found. I do use my walker everywhere but I have to let go occasionally and this is my downfall (probably wrong choice of word).

Love and hugs,

Barry x

[nunhead_man]

I have to say I'm also guilty as charged in the sense that as my grip weakens I continue to try to do things I used to do where part of my brain tells me I've no longer got the ability to do it - luckily no major disasters so far but sure as eggs is eggs at some time I'm going to try and pick up a piece of expensive crystal above my head with the consequent loss of it as it slips through my fingers