Today i saw my neurologist today for the first time since my dx - i had been really nervous about it all but it went really, really well.
I have seen him twice before in more sombre circumstance, once when he though i had a brain tumour and once again to tell me i actually had MS. Prior to being re-assigned to him, i was under a locum who thought i was imagining it all (yes that old chestnut) Today as he had no bad news to break to me he was really relaxed and helpful. He suggested i start DMD’s asap, answered all 700 of my questions very honestly and fully and was just a nice human being! If anyone out there is having a bad time with a neuro-please don’t despair - there are good ones out there! I feel so much more positive about the future, now things are starting to move forward. Will see my MS nurse in a week to start the ball rolling on rebif and will see him again in 4 months for an update.
Just wanted to share my positive day with you all and thank all those who have given me the support i needed to get to this point.
really pleased to hear you’ve had a positive experience and day - good for you! i am awaiting an appt with the ms specialist - have been referred to him from quite a crappy couldn’t care less neuro and i can’t wait! he was a speaker at a meeting i went to a couple of weeks ago and he was brilliant. i chatted to him for a bit, and that was enough to make me feel positive about the future. i think all we need is a little glimmer of hope!
Good stuff! They haven’t ALL sold their souls to the Devil (those who even had souls).
I don’t tend to find my appointments unpleasant, so much as a bit pointless. As I’m not on DMDs, there’s not usually much for us to review or decide, and I’m sometimes told the things I do complain about are “not MS”, which leaves me wondering why I’m feeling so rough, if it’s not the ONLY thing I’ve ever tested positive for.
But there’s never been any unpleasantness or ineptitude (that I’m aware of).
I am also not on any medication other than just started a course of steroids, nothing else though so I do find my meetings with my Neuro a bit pointless, I’m sure the students which are always present find it enlightening though, although they do look a tad bored, or is that me.
I’m really pleased for you. If only they were all like this! I don’t have a neurologist any more, as he can’t do anything for me I am not worth spending any more time on and have been discharged! Any problems I am to contact ms nurse, only I don’t have an ms nurse! I have seen three different neurologists in the eight years since I was referred and all in all it has been a pretty negative experience. First one said, “no cure, no treatment, avoid heat, avoid exercise, avoid stress!” Second one each time I saw him and told him I was worse would say “I’ve still nothing to offer you.” Third one, as I say saw me twice and discharged me. They have all said my ms is mild, but it doesn’t feel mild to me. I was diagnosed seven years ago, and have deteriorated steadily, I lurch around at home on crutches, use a wheelchair everywhere else, I have dropped foot, they did at least provide me with a foot brace, I cannot live independently, no longer drive, have trouble with my grip, frequently drop things and struggle to use a knife and fork and as for my bladder and bowels…!!! However, I am pleased that you have a better experience and wish you lots of luck in the future. Sorry for the rant!!
