Forum Replies Created

  • nicholas-brown

    Member
    December 26, 2020 at 1:24 pm in reply to: How do you answer the question, “How do you feel?”

    I always say “fine” with a big grin – mostly because I am . If I’m not then I wouldn’t want to burden anyone or give them concern. There’s nothing they can do about it. I live a solo life so there’s really no option other than being “fine” It’s reflex after all these years.

    I do have to remember not to do that when I’m with my MS consultant and team, however 🙂 So often I breeze in with “fine” and then have to check myself and say “er, well actually….”

  • nicholas-brown

    Member
    October 14, 2019 at 9:27 am in reply to: Newly Diagnosed – Advice welcomed.

    Hey Jono

    Just seen John’s reply on DMTs and would definitely reinforce getting yourself up to speed with the various DMTs. You should be pushing your consultant on why Copaxone vs other injectables like Avonex and Rebif. Look at the side effects and decide what you can live with. I was on Avonex for 10 years and had chosen to inject weekly rather than more frequently even though it was an intra muscular injection. The night of the injection I would get flu-like side effects for at least 18 hours. A bit tough but it worked for me.

    I’m interested why they are promoting Copaxone rather than Gilenya or Tecfidera, but do understand that consultants often see the beta interferons as the starting point and progression to the daily pills is often, as John pointed out, as a result the previous treatment failing.

    My advice is that you do your research and keep pushing your consultant until you are comfortable.

    Nicholas

     

  • nicholas-brown

    Member
    July 7, 2019 at 10:19 am in reply to: Newly Diagnosed – Advice welcomed.

    Hey Jono

    Just a quick note to sympathise. It’s a shock when you get your first attacks and the resulting diagnosis. I’m another Brit and some 40plus years into the disease. I’m now 65 and still hiking ultra marathons and climbing mountains. There have been many attacks along the way impacting walking, sight, hearing, bladder and bowel, but I’m one of the lucky ones who return to pretty much par each time – there are bits of me which are a bit crap but by and large no-one would know that I’m an MSer. Everyone’s form of MS is definitely individual so what I’m going to say works for me but may not for anyone else.

    On diagnosis I reacted by essentially blocking it out and partying extra hard. I was young so “live fast, die young” seemed to be a great mantra. Perhaps luckily I hit a fast track corporate career so had to grow up pretty quickly and the partying had to stop. I also had to look at controlling the MS so that it didn’t interrupt my career. At this period there were no DMTs available so I used steroids during the attacks and sheer force of will to keep going. There’s a lot to be said for enforcing a positive mental attitude. Once they became available I eventually went onto DMTs – my first was Avonex. Most medics, here in Britain at least, would advise going onto these early and I’d probably support that view although I’ve always previously been reluctant to use drugs on a long term basis. After 10 years I swapped onto Gilenya – pills are so much better than injections! However, I didn’t settle well on them and so stopped for 18 months (with my consultant’s sanction but against his advice). I had to go back with my tail between my legs having grown 3 new lesions and had a belter of an attack within that period! I’ve now settled on the Gilenya and since then there have been ups and downs but nothing has stopped working. So DMTs good.

    In addition, I’m a very strong supporter of exercise as an essential ingredient in managing the disease. The premise is pretty simple in that I believe if you are as fit as you can be within the limitations of the MS then your body is in the best state it can be to both resist attacks and recover from them. The corporate career had resulted in my being – how shall we say this – portly, albeit still with some level of fitness as I had always maintained some presence at the gym. In my mid 50s I decided that I had to take a more responsible attitude to my health and so got myself a personal trainer. Fortunately the 26 year old Aussie I hired back then studied MS before setting out my programme and so set to work on balance and coordination rather than a focus on body building, etc (sadly I still don’t have the figure of Adonis). 10 years on and still working with the same trainer, I know that the discipline has helped, added to which I’m a lot slimmer and fitter. I have recently arrived back from Peru where I hiked the Inca trail over 4 days.

    The upshot is that an MS diagnosis doesn’t always end in disability – that said with the knowledge that I have lived a charmed life in avoiding it so far.

    Take heart. MS is a tough call but you can manage it.

     

  • nicholas-brown

    Member
    June 21, 2019 at 12:08 pm in reply to: Ibuprofen?

    I used it a lot before I went onto DMTs and found its anti inflammatory ability a help in taking the edge off symptoms. I still use it when I get an MS driven headache. The DMTs (I’m currently on Gilenya) have meant I now use it much less.

  • nicholas-brown

    Member
    October 25, 2019 at 3:20 am in reply to: Newly Diagnosed – Advice welcomed.

    Hey there

    My reaction to Gilenya was that I found myself feeling as though I was “living in a cloud” – I just wasn’t as sharp as felt I should be. It wasn’t easy to describe, just that I felt somehow blunted. I talked to my consultant about it and he said the only real test to see how it was affecting me would be to come off the drug for 3 months. We agreed that I would do this and report back. When I went back I was feeling so good that I said I wanted to quit the drug full time and go completely drug free. My consultant said “that’s the wrong answer, Nicholas” but gave consent. About 18 months later I was back with my tail between my legs after the worse relapse since I had started DMTs. The consultant was very kind and refrained from saying “I told you so”. Back on the drug I am still conscious of that slightly blunted feeling at times but there are no other real side effects so I’m happy to get on with it.

    Going onto the Gilenya is an interesting exercise but nothing to be worried about. My heart rate is normally quite slow – I’m about 50bpm and lower at rest. The guys at hospital wired me up at 08.00, gave me the pill and monitored as I bleeped away. As it took effect my heart rate slowed to such an extend that the nurses came in, puzzled, and asked if I was an athlete. I wish! I got down to 39bpm and they weren’t going to let me go until I got to back up to 50bpm. However, the day unit was due to close for the evening at 20.00 and staying would mean I would need to be transferred to a ward overnight, so I negotiated my way out of there at 46bpm with assurances that I’d behave myself – not doing anything wild until at least the following day (the unit boss knows me well)!

    I’ve been back on for a couple of years now and doing well with it.