Dalfampridine

[Buffergirl]

A few weeks ago, I read on this site about the potential benefits of the above drug on patients with Ataxia. I still have no precise diagnosis although am told that I have CSA and am primarily affected in my lower limbs. I have spoken to my neurologist about being put on Dalfampridine even if I have to fund it privately. I understand that it is in a class of medications called potassium channel blockers which work through strengthening the signals from the brain to the nervous system. (Thank you Wobblebee for being so up to speed with all this). My neurologist has simply come back saying that he has no objection to me having the experimental drug although, unless licenced by NICE, it is best given as part of a clinical trial. I should like to pursue this further but can anyone advise on my best course of action? When talking to the medical profession, it constantly feels like the tail wagging the dog and no one seems able or prepared to take responsibility. I have always learnt far more from this website so thank you very much.

[wobblybee]

🤔 So..It appears that on the one hand..he’s willing to prescribe but..he thinks you should only receive it by being involved in a Clinical Trial.. But he wasn’t able to give information relating to a Clinical Trial in the UK re Ataxia..

It is an expensive drug, and effects can be variable, even for people diagnosed with MS (who are prime candidates). Unless he’s prepared to request ‘special funding’ on your behalf..your only option may be paying privately.

Dalfampridine ...is also referred to as Fampridine

mssociety.org.uk/what-we-do...

Info re previous Clinical Trials for Dalfampridine and Ataxia..

clinicaltrials.gov/ct2/show...

[Buffergirl in reply to wobblybee]

Thanks, Wobblebee. It's all quite scary really especially as the drug is tailored to MS patients (although so many symptoms can be similar). However, I think I would still pay privately for the drug if there was more evidence. My neurologist is probably jumping up and down for joy now because, after a year, I've now received an appointment to see an Ataxia specialist in Cardiff so all my woes can be passed on to him! Unfortunately, I have little faith that I will get much further. Thank you again for being such an amazing contact on this website.