Has anyone tried fampridine? If you did did it help so and if it did how much did it improve things?
I can walk for 10 minutes. This really restricts what I can do and really want to improve things.
Unfortunately in England I understand fampridine isn’t available on the nhs so am debating paying for it although am unsure of the cost. Would be useful to know how much it helped. I have multiple spinal lesions
It used to be available from the Walking Clinic at UCH Queens Square, in London. Not sure if that is still the case, but worth asking if you are in range.
I have thought about it but not pursued it because I’m so scared of the possible risk of trigeminal neuralgia. It seems to be linked to a greater risk of that, and there are enough people on here suffering with TN to scare me right off fampiridine or anything else that might increase my risk. Worth a Google if you’re interested.
Is the trigeminal neuralgia a permanent thing if it causes it? Or does it go away if you stop the tablets?
I can only walk 10 mins and have 3 very small children. I have a newborn and found out I was pregnant and ms at same time
I used it for about two years and certainly found it helped, I only stopped taking it around September 25 as at that stage I was no longer getting the results (ppms) that warranted the £186 per month cost, you’re quite right it not available on the NHS in England so you would need to obtain a private prescription from your consultant (not a Doctor).
I would say it’s certainly worth a try, and you should be able to ask your consultant to recommend a trial for 30 days which from memory was free for the first month to see if there was any benefit to yourself.
The company I used is call Sciences, telephone 0333 103 9499, they are helpful if you need any further advice on what to do.
Good luck
Thanks Marlin
Can I ask what improvements you saw?
Also were you much worse after stopping it? I see some people say when they stopped it they were much worse than when they started it and wondered whether the medication had accelerated their ms
Hi,
Apologies for the delay responding.
I personally saw a big improvement, with my walking becoming more fluid which in turn made my ability to walk further. I personally never suffered any ill side effects.
As for making my condition worse, again I personally never noticed any difference. I stopped taking Fampridine as I was no longer getting the results I was paying £186 pm for, that said It certainly helped my ppms over the space of two years.
It is difficult to say if you would benefit from taking Fampridine, because as you know MS is different for everyone, but I would say its worth trying.
BW
My doc discouraged me from taking it as it causes potential seizures in my situation.