Having been waiting almost 2 months for my first appt it is now almost here. I’m really starting to worry about it. I’m completely open minded about what may or may not be wrong. I’m just terrified that the neuro is going to think I’m imagining it all. So many people here have had bad experiences recently that I’m almost convinced the same is going to happen to me. Being paranoid is not something I normally suffer with!! Sorry just having a pathetic moment!
Hi, I’ve just had my appt today (9 week wait). The consultant was lovely, really matter of fact and thorough. She is pretty certain it is MS despite my only symtpms being optic neuritis and vague numbness.
They know what they are looking for and even if to most people the symptoms seem vague and not very clear, to the specialists I think they know what to pick up on.
Hope it all goes OK for you.
Liza
I completely understand. we always hope/assume all medical professionals are going to be lovely, kind and caring and are going to do everything they can to get to the bottom of things and help us. Like you say, so many people don’t have a good experience, me included, but like everything in life, we always tend to hear the bad stories. i expect for every patient who has a negative experience there is at least one who has a positive experience, and who’s to say you won’t be someone who has a caring and listening neuro. Just remember, these professionals maybe highly paid, well qualified people but at the end of the day they are just humans like us. And… if you are not happy with the outcome of your appointment, you have every right to a 2nd opinion or even a 3rd if thats what it takes. It’s strange isn’t it how for so many of us in limbo we are caught between wanting to be told we have MS and not wanting to know. What we really want is to feel we have been listened to and understood and given hope for a way forward. Although we don’t want to be ill we don’t want to be told there is nothing wrong with us, because we know there damn well is! The more I look into things and the more I read here the more i understand just how complex MS and other similar illnesses are and I really am beginning to understand how difficult they must be to diagnose. Anyway, i’m waffling on, sorry, hope all goes ok for you at your appointment, let us know how you get on xxxx
Hi Sharon,
Don’t forget that people or more likely to be vocal about a bad experience than a good one. So the negative posts you see here may not be a fair reflection of most people’s experience.
I had no problems at all with my neuro. In fact, after what I now realise had been years of problems, it was the first time I felt I’d been referred to the right discipline, and got someone who who was on the right track straight away.
I’d previously been misdiagnosed with depression, suspected of having sero-negative inflammatory arthritis (the Rheumy guy was excellent and I think would have cottoned-on eventually, but he left after one visit, and was replaced by someone who discharged me with a diagnosis of “wear and tear” and a recommendation to rest and take ibuprofen). I’ve also been given a number of other (in retrospect) ludicrous explanations over the years, including that I have one leg longer than the other, and that it was all from wearing “silly shoes” (which I never have).
Try not to prejudge, and think that all neuros are just looking for reasons to dismiss you.
Although it’s not nice to learn there are lesions on your brain, an MRI found them for me, and at last someone was able to tell me: “Tina, it’s NOT psychological - we’ve found it!”
I said, weakly: “Oh. I’ve not been feeling very well…” And he said: “No, you certainly haven’t, have you?”
It was the first time I felt someone knew I’d been putting up with “a very bad thing” and wasn’t a complete fruitcake.
Tina
x
I hope it goes ok for you but totally understand your concerns. I personally felt so frustrated at being told it was anxiety not that I want ms but there has to be a cause for the symptoms. Are you taking someone with you? I didn’t have anyone free to come and wished my best friend had been able to come and back me up.
Thanks guys. Feeling more myself this morning. In my heart I know the majority of posts have a resolved outcome. Just the head lastnight was winning! At the moment my mobility is great and I feel as though this episode is coming to an end. I seem to have been left with my twitch but the shaking has almost gone. My memory and co-ordination is still cock-eyed though. I think because i’m feeling so much better part of me is back to thinking that maybe i am imagining it all again. The other part of me is saying ‘yeah that’s what you thought last time!’ I’m taking my OH with me on Wednesday but hoping he backs up what I say as I’m sure he doesn’t really believe everything I say! Back to writing my list. I really need to condense it as at the moment it’s 3 pages long!
Sharonx
Hi Sharon,
My first appointment is also on Wednesday. I completely share your feelings and frustrations. I too have made a list, it sounds like the workings of a hyperchondriac! haha!!
Best of luck and I hope the neuro takes it seriously and orders the appropriate tests for you.
Lyn x
Hi Lyn, your list was to the point. I have now managed to shrink mine from its initial 3 pages to just over 1! Hope your appt goes well too
Sharon x