Good evening everyone, Well it’s taken four years but on Tuesday I got my dx of rrms. A little up and down at the moment with family a little shocked, even though I expected it. Now waiting for the ms nurse to call and talk about dmd’s. Can these be optional? Neuro says I have to inject 3x a week so not looking forward to it, and the app was rushed as he was running late? Nothing changing at the moment though until the nurse gets in touch. Thought I would just touch base here and ask about medication. Will check back in tomorrow, just been on 5 day high dose steroids and only feeling halfway human at the moment, Best wishes, Orchid
Hi Orchid, just wanted to say ‘Commisulations’ (commiserations and congrats) on getting your diagnosis. Four years! I’m only 15 months into limboland with a neuro appointment in two weeks. Wishing you all the best and as much support as you need.
Never sure whether to congratulate or commiserate, in these circumstances. It can still be a shock, even when it was expected, but also something of a relief to learn you are NOT mad, and also to rule out other possible nasties, that are even worse than MS (and yes, there are some).
I think you can expect to feel quite up and down for a while.
Strange as it may seem, I felt almost elated when I was finally diagnosed (after years of not feeling well, like you - though it was quick once I finally got to Neurology). But it took much longer to realise this illness was permanent, and it wasn’t just a case of having ‘flu’. I think, the first few weeks, or even months, I still expected it was going to get better eventually, because, like most people, I had no experience of living with anything that wouldn’t get better.
On the plus side, of course, I have relapsing remitting, so yes, it has got better, up to a point. I don’t mean to say you will never feel better than you do today, because you almost certainly will.
ALL treatment is optional - your consultant can certainly advise, but cannot dictate; ultimately, it’s your body, and your decision. IF you opt for DMDs at all, you are supposed to be given a choice which one - not all are 3x a week - they range from daily, to once a week, so it’s slightly odd your consultant seems to have decided already which one you’re going for, without discussing it with you, otherwise he couldn’t know the frequency. But as you say, he did seem rather rushed. The nurse may have more info about why they’re recommending a particular one - IF they are - and why you’re not being offered the choice. You can also discuss the pros and cons in more detail, to check if it’s definitely what you want. You shouldn’t just be steam-rollered into it. If you need more time to think or research, don’t be afraid to say so.
Hope this helps,
Tis a weird feeling isn’t it…although you expect it and in some way want it to end the waiting, I know I felt underwhelmed…like is this it?! How has the news affected you? What are you feeling? hope in some way it feels you can move forward somehow, but if not it’s early days in terms the news. Be kind to yourself whilst it settles x
Comisulations as Reiki said. Hope you are ok and get the support you need x
Hi, just sending you a hug and suggest you talk to MS nurse more about the dmds, before agreeing to go on them.
Hello all and thank you for your replies and kind words. I feel, a little,…I don’t know? You get the result you are expecting but nothing really changes. I am glad I have the dx, after all, all these weird feelings and sensations had to be something. I know I was only given dx Tuesday, but already have gone into a crying meltdown three times, though as I said I had been on steroids for five days and they played havoc with me, more so I think because u didn’t sleep for 5 days. Today is the first day I have felt ‘normal’ for nearly two weeks now and I am grateful for that. Relapse seems to to ebbing too, not so much hot/cold weak leg today. I have the day to myself tomorrow so am really looking forward to that. As far as medication, you are right. I will wait for the nurse to contact me and will have a chat with her and hubby as I have had the origional episode then two more but with two years in between. Have been left with a weaker leg but nothing to stop me doing the school runs, shopping etc so not sure I really want to take medication as yet. I am sure I will be back here for advice soon. Lots of thanks and best wishes to all, Orchid x