Have regularly read about others on MS Trials and or commenting on one that they completed. Some have even got onto several trials. Whilst I am genuinely really happy that a fellow MS sufferer has been successful in getting onto them I am more and more annoyed and frustrated for myself.
I visit sites that the MS Society, MS Trust and others advice me to go to that list trials and do all that is required. I still cannot get onto any trial! Am I missing a trick? How lucky do I need to be? It is really cheesing me off. I hear of trials too late, my Neuro and 2 MS Nurses are regularly spoken to.
I have PPMS and see no hope to be honest now of any treatment apart from symptomatic care from MS Nurses. An existence not a life.
Never been particularly lucky in life so guess this should have been expected. Sorry for my rant
You could do worse than take a look at ldn as a possible treatment and see if you think it might help. My GP started prescribing in 2004 and convinced it has eased symptoms and slowed down progression.
I do think that luck does play a part in the opportunities, BUT you can make a fuss with your GP / Nurse / Neuro which if done well (and a bit of luck) can promote you up any consideration list. I used to stay quiet and never got involved in trials. Friends and family urged me to be more proactive in persueing numerous therapies and options. With the support of my helpful team of professionals I have been involved in some trials. No massive benefits but at least I felt that I was doing something.
my last trial had a definite conclusion that Tysabri was insufficiently effective in SPMS to be economically viable. The pharmaceutical company pulled the plug pretty rapidly after 15 months of poor numbers!
Thanks for the heads up. Ocrevus has already been licenced by NICE though. I was diagnosed with PPMS three years ago and I am still mobile. This is a good example. Why have I not found it, it found me it my Neuro ask me about it?
I just donât get it. May I ask where you have seen it so I can look over it and maybe apply for it. Side effects donât bother me but what this PPMS has in store for me does though.
LDN has been on my radar but havent got my head around the procedure required to attempt to get it. I thought only a few pharmacies could prescribe it, one of which was Dickson in Scotland. May I ask how you have got your GP to prescribe it because I thought they couldnât.
That does sadden me a bit though because surely our âhealth professionalsâ should be doing that for us. In my case I donât know where I would start. My GP and MS Nurse are in Kent where I live and my Neuro in London with no connection to each other. Every time that I have asked them to help me with getting something from the Neuro they say that they have no influence with him
My neurologist actively watches out for trials and ongoing studies or research. He asks his patients if they would be interested in any appropriate trials. I have enough confidence in my neurologist to listen if he thinks a particular trial is worth it. If you have good communications and confidence in your neurologist you could ask them to keep an eye open for you. You can always be proactive in seeking trials / studies via the internet but you might irritate your team if you ask them about too many which you might not be suitable for.
that sounds horrible and very frustrating. I had 3 neurologists who were not approachable or helpful. I then spoke with a friend who also had MS. He told me about his neurologist and I found that he had a private practice, so I was lucky enough to be able to pay for some consultations. I knew that I trusted what he said. I managed to be referred to his NHS clinic. We looked into 4 trials, only two of which did I qualify for. In both of these trials the medication had no obvious positive or negative effect. If you do get on to a trial, you may not be on the active drug, and you need to remember there can be risks. If the trial is being funded by pharmaceutical companies they are in control.
There is nothing to stop your GP prescribing ldn off label, if they consider it is in your best interest. I went to my open minded GP armed with some information to read and she was happy to prescribe, as it was highly unlikely to do any harm. Itâs true that most GPâs are reluctant, but the answer is always no unless you ask the question.
If this route fails then private prescriptions are relatively easy to obtain.
Any chemist will get the stuff if you have a script, but Dicksonâs can supply ldn at a price that doesnât rip off the NHS.
Iâm sorry to hear youâre feeling rotten about this. I was asked by my neurologist twice in the past if i fancied a trial. Didnât know you could get on them in other ways. I said no both times because 1) you might end up in placebo group and not get any meds at all which i thought was risky and 2) side effectsâŚi didnât feel a trial was very appealing at all, if you know what I mean?