I have my annual meeting with my consultant tomorrow and anticipate the usual can-kicking exercise. It’s five years since my diagnosis and am maintained with a minimum dosage of gabapentin, and the suggestion of DMTs if and when they are required. We didn’t get off on a good foot as he dismissed what I thought was my most significant symptom - the MS hug - in that he immediately dismissed it as not MS related. The mere fact I consistently walk in unaided and appear to be managing usually results in an inconclusive 15 minute interaction. My social feeds suggest myelin regeneration meds and physical therapies - probably quack ‘cures’ - though I know there is legitimate research making in-roads. What should I be looking out for beyond my general symptoms and what questions should I be asking of my consultant?
Think you’ve answered your own question! i.e. not worth much at present.
Perhaps your quest for more activity could be satisfied by participating in a clinical trial? Don’t bother asking your MS Consultant or Team - they sound like they are only interested in going through the motions and maintaining the status quo. Don’t expect them to put themselves out for you - mine didn’t! Go and find a suitable one for yourself.
Try https://clinicaltrials.gov/ - it’s a US site but many trials are global in scope.
Or stick “ms clinical trials uk” into a search engine.
Also a site on MS Soc too.
I got onto a BTKi trial, made contact in US and got referred to a UK trust participating in the trial. It was brilliant - their care, interest and attention to detail. You also need to make the time and travel commitment from your end too. Subsequently transferred my NHS MS care to that trust and they were equally excellent on the NHS stuff too.
Graeme
Hi Russel. Yes, it’s definitely worth going mate. Your previous encounter(s) may have partly been the neuro under a heavy schedule trying to borrow a little bit of time from appointments hile working through the waiting room but, don’t let that put you off - the NHS has been under pressure for a while now. That’s not your problem - you still deserve to be assessed by someone that knows what they’re doing.
You may have to lead the conversation and push through a little so, take a note of all the bits that you’d like discussed. If you don’t think the Gabapentin is helping, tell them that and why.
If you want to get the DMT moving along, let them know that an earlier start is shown to give a better outcome. At the very least, showing that ou’ve put some thought and reading into your own healthcare may bring them round to at least seeming a bit more receptive 
Remember mate - you’ll be talking to a normal person. Yes, they hold a lot of knowledge but, they’re made of the same stuff as you and me. It’s ok to be a little assertive without being rude or clashing.
I hope your appointment goes well - keep your chin up and go in there prepared.
Let us know how you get on 
Good luck mate 
Jon.
Hi @russel . Can I ask what myelin regeneration meds your social feeds are suggesting?
I’m rather surprised that although you have been diagnosed ( and take Gabapentin) for symptoms you are not on any DMT! The general guidelines and recommendations are that MS patients are put on a DMT as soon as possible. Waiting until things get worse and you develop new lesions is not at all helpful!
Are your appointments worth it : yes definitely. Some people would give their right arm for an annual meeting with their neurologist.
Do you also have appointments with your MS Nurse? It’s important that your neurologist knows if and how your MS is developing and for you to tell him/ her about any new or worsening symptoms. I’m assuming you get an annual MRI?
If you don’t have any new or worsening symptoms that’s good and long may that continue but ---------Whatever you do don’t drop off the radar!
Thanks for the responses. Consultation went okay today. Brief but relatively informative. In essence my RRMS is currently considered ‘dormant’ with any changing symptoms/physical effects likely attributable to MS and my age (I’m 63) being uncomfortable bedfellows. Fortunately I do largely sedentary work on my own terms and can continue to drive. As a very sporty chap in the past, I currently measure my capabilities on what I can and cannot do. I can still play 5-a-side football for an hour every week (in goals) but doubt I could walk 18 holes of golf though, ironically, the process of rotating my trunk through a swing is physically beneficial. Other general health checks reassuringly suggest no underlying concerns. Interestingly, when I asked about how I could identify a relapse and a possible transition to another MS classification my consultant suggested that the four levels are an histrorical and artificial construct of the pharmaceutical industry! As for relapse…I’ll know all about it as it will be a significant change from my norm. With gabapentin, I don’t appear to have the ‘zombie’ effect but I don’t know if the dosage is just low and whether a higher one would mask ‘The Hug’ which is ever-present? To Hank_Dogs, I didn’t pay much attention to the snakeoil salespersons that pepper my social feeds as, if there was any credibilty to their claims, we’d know all about them.
Well done for getting in there mate
I suppose dormant is a good word - correct me if I’m wrong but, that sounds hopeful
I received a letter from my consultant this morning following our last appointment. He says that I have active RRMS but, that’s not too bad - I’m meeting my MS nurse soon to finish up details for starting my choice of DMT.
… It could always be worse.
Have a good day mate
Jon.