AIUI, you cannot get Ampyra prescribed as an NHS medication anywhere in England.
Any prescription must be a privately issued one.
So you pay for a private consultation and then for a private prescription. Simple.
But, did you read the small print? (F)ampyra use must be monitored by a neurologist - so this could just maybe be why your Health Service Consultant either did not or could not prescribe. Of course, you could pay for the monitoring as well.
You get the prescription and get a free trial. I believe it used to be two weeks but is now one month.
If you get side effects you stop there and then (I know of one person who had to stop inside the first few days).
If you do not get a substantial increase in walking speed, you stop. End of story.
I believe that about 1/3rd of those who try it get some of the side effects.
Another 1/3rd do not get any increase.
Only about 30% of the remaining third get a real increase.
That works out to about 9%-10% chance of a real improvement.
And, it acts to boost all neural transmission, not just to the legs; and that includes down neural pathways where there is no problem. Think in terms of pushing 10 amps through a 5 amp circuit!
You can read all the reported side effects on Biogen's own website under the Fampyra tab.
Not for me.
I realise you can't get for fampyra here in the uk on the NHS, what you could get was a private prescription off your neuro for the free months trial and then if it works for you you then continue to get a private prescription off your neuro and pay for the fampyra yourself from bupa home care, but now the neuro is saying the rules have changed and he can't write the private prescription for me as I am an NHS patient, sorry if I didn't make my question clear, I was just asking if anyone knew about this new ruling? I also know I can have a private consultation with my neuro and get the prescription privately but he didnt tell me that when he first said I could try it, as I said he said the rules have changed! Ive studied fampyra for quite a while now and am quite aware of success rates, side effects and the fact I need to be monitored and with the actual problems I have with my ms I think its definitely worth a try for me.....
I would not consider Ampyra unless I was one of the 10% who get good results.
If you are one of those, then you really have a decision to make.
What you are going to have to do is to trade off potential problems in the future, against improved quality of life now. No-one knows how long before any side effects really kick in, so the trade is in the nature of good years against life expectancy, moderated by other considerations.
If you are in your 70s, and it will keep you out of that retirement home for another few years - why not?
If you are in your 30s, and female, and you want a child, and Ampyra will help you through the first few years of raising that child - why not?
If you are in the middle and it could mean you end up with two good years and ten very bad years - why do it?
Of course, there is nothing to stop you from having the trial, and if you are one of the 10%, then you could defer the decision on having regular Ampyra. Just remember that if you stop after a few months, the benefits stop right there and then.
This is about doing a cost-benefit analysis, but where the cost is not just in cash.
As for the "new rule", I would want to ask just who made the new rule? It could be anyone from the Head of Neurology Services in the hospital you attend, or the Hospital Board, or someone above them.
To be blunt, I think that you have taken a sort-of shotgun approach to a very real problem.
You are firing all sorts of treatments at your problem, and none of them seem to have worked terribly well so you want to try another one.
So, let me ask ...
Have you ever had a full neurological examination (the sort of thing that takes about an hour)?
Have you had a full spinal MRI?
My take would be that if a chiropractor has not properly identified the cause of your problem(s), and done something about them, then the cause is not skeleto-muscular.
From what you write, a lot of your problem seems to be centered on your dropped foot, and that is most probably a problem with the nerve controlling a muscle in your lower leg. Dropped foot can lead to instability, and fatigue as you tend to do more work with the opposing leg. If the problem does not originate in your brain, then why should reducing a CCSVI condition make any real difference? You don't say where the syrinx is, but to affect your left leg, it would need to be around the T4-T6 vertebrae - in which case it could certainly influence a drop-foot. If you are not carrying a Dx of RRMS, then a DMT is probably not for you - but if a Neurologist has suggested one, you have said no - but then asked for a script for Ampyra, well then I could quite understand that Neurologist, saying that it could not be given.
Maybe you need a fresh start with a different Neurologist. Don't tell the guy what is wrong, set out your mobility and stability issues and let him tell you - but do press for an MRI scan of your spine (maybe your brain as well, but the spine for sure).
If you are with me so far, then look at it like this - if you try Ampyra and it works, then your problem is really neurological, so you want a Neurologist on your case.
you are certainly right about me firing all kinds of treatment at this but thats my way of dealing with my ms.
i have been diagnosed with rrms but not by a spinal tap just by MRI, my symptoms started 18 years ago and I was told immediately by my neuro at the time that I had probably got ms but just to go away and try to live my life as best I could, for years I was ok just the odd numbness etc, then 5 years ago I was so fed up of the fatigue that I decided to get a proper diagnosis I had moved area by this time so saw a new neurologist who diagnosed me after a brain MRI and evoked potentials test i was going to start on copaxone but then heard about LDN so went on that instead and I'm still on it four years later it has helped with various symptoms.
The syrinx was discovered on my c spine at c3-c5 two years ago when I had another MRI this time on my brain and c spine. I also have fusions at c3-c4 and of c5- c6 which were picked up on a normal X-ray after I had been having problems with my neck. this is why I started seeing a chiropractor who also did a full spinal X-ray which also showed the fusions obviously, also a narrowing at L5-S1, a mild thoracic curve, decreased cervical lordosis and a pelvic misalignment. The chiropractor has helped me emmensly with my neck problems and my posture but said right from the start she didnt want to say she could "cure" me of ms but if we could get my spine into better shape it should help, I think she thinks my walking difficulties stem from all the problems with my spine but of course she cannot state that I don't have ms.
You asked if I've ever had a full neurological examination of about an hour, this made me laugh as the only examination my neuro does is when I ask if he can check my strength and the usual test they do on the feet etc, he never offers to do it , I have a ten minute appointment every six months if I'm lucky, this is why I'm so frustrated with my neuro as he has never looked at the big picture with me. This week I have had my yearly MRI on my brain, c spine and t spine this time ( I have a yearly one so my syrinx can be measured)
I also use an FES machine which I sorted out myself through my local ms centre which I am still using.
I wanted to try the fampyra as its a nerve conductor and the neuro has said yes I can try the free months trial but hasn't got round to prescribing it yet, he does Prescribe it for other patients so it obviously works for some people but like all ms drugs they work for some people and not for others.
I think I need someone who will look at the big picture, I know I give a lot of things a try but I don't have anyone to advise me on what i should be doing apart from taking the DMD's.
you're very interesting to talk to Geoff and any advice you could give me would be most welcome.