Does anyone else get increasingly frustrated with their Neuro, I’m due to see mine next week although I can already imagine the conversation, I’m now really struggling with mobility but I know there will be no offering of any medication as there never has been apart from a couple of courses of steroids. If this time I don’t come away feeling a bit more satisfied with the options available (and I really don’t want to hear ‘there is no medication that works’ yet again) I will contact whoever and change my Neuro, has anyone else experienced a brick wall when seeing their specialist?
When he says ‘there are no medicines that work’, what does he mean exactly? There is no magic cure but there are drugs and therapies which can help to manage the symptoms - they don’t work for everyone but how can you know unless you try?! Are you on DMD’s? Has it ever been discussed? You shouldnt have to deal with this all on your own x
I know there is no magic cure but I have never been offered anything (other than steroids) to help manage relapses etc, no DMD’s nothing.
sorry if i came across the wrong way…I was incensed by his attitude about no meds working. If you are having trouble with mobility there should be no good reason to not have DMD’s providing you are dx RRMS and meet the mcdonald criteria. Have you ever asked for them, if not i would bring it up with him, and if you dont have any luck ask for a second opinion. It does not sound like he has a great attitude. x
First, see if you qualify for a DMD:
and, if you do, then ask that Neuro:
“Do I qualify for a DMD?”
If the answer is “NO”, then ask “WHY”?
Personally, I have never found the Neuros that I have met to be anything less than constructive, and usually ready to explain anything that I have asked. But, if you don’t get a good answer, you might have to think about changing. Of course, if this is more about the Post Code Lottery than the individual Neuro, a change might not do you any good.
No he doesn’t have a great attitude always seems more concerned about impressing his students who he has present at every consultation, maybe I didn’t fit the criteria until now to get DMD’s… He was the consultant who diagnosed my MS in the first place.
could your ms nurse help by referring you to a neuro physio, they are great for mobility problems
Oh, yes, and I’ve seen three different ones! The first one said, “no cure, no treatment, avoid heat, avoid exercise, avoid stress, and if you get an infection get it treated quickly.” Was he really saying “go home, sit down and wait for paralysis?”. The second one was better, at least at first, he listened to me and talked to me and answered my questions, then the times between appointments got longer and I would tell him I was worse and he would tell me he still had nothing to offer me, and I was making a 100 mile round trip for this because he was an ms specialist. I got my gp to refer me back to a local neurologist who saw me twice and discharged me on the basis that he can’t do anything for me, so I am not worth wasting time on even an annual review. Presumably it is also a tick in a box as a successful outcome when a patient is discharged. He told me to contact the ms nurses in the event of anything ms related, but in my experience they don’t always return calls and have a couple of stock answers with which to fob me off. Forgive me for being negative, but my experience is entirely negative. Maybe it was my age at diagnosis (49) or the fact that I went straight to SPMS, conveniently for the nhs that meant no chance of DMD’s.
Yeah I know the feeling, that said I can’t praise the MS nurses enough, I’ve found them nothing but helpful and I always get a call back from them.