Yes littlelady67 I think I know exactly what you mean. I don’t know if it’s ms that are causing my problems or not but given that everything else I’ve tried has had minimal benefits, sometimes it think it would be nice to try a course of steroids to see if they might help but this has never been offered to me as an option. I realise I may be being naive in thinking like this but sometimes I just get to the stage that I will try anything to see if it helps. Ann Marie xxx
I think I must be one of the lucky ones. I can contact my MS nurse whenever I need to by phone, email or mobile phone and I can arrange to see her if I want/need to. She liaises with my neurologist if she feels its necessary and I also see him at least once a year. I will say however that I have only been this lucky with my care since moving as I found my care previously, in both Bristol and Lincolnshire to be seriously lacking. It does seem to be the luck of the draw unfortunately.
I’m still waiting on an answer to an email I sent 2 weeks ago to my MS nurse. It’s to arrange medication for my tingling/electric type buzz shocks in my left eye down to my left side of my mouth. I’m off work as I’m having a min of 60 a day although they only last a second it’s so debilitating as it affects my balance etc. I dread waking up as I know they are gong to start again, but the neurologist said it’s just a continuation of what I had and he could give me a drug used for epilepsy to try. I was down to about 3 per week and since starting the Rebif in February the ‘do’s’ have grown in number to the extent I’m back where I started a year ago but he insists it’s not a relapse. My GP has been wonderful and if left to my MS Nurse and/or neurologist I’d be banging my head against a wall. And funnily as the above post mentioned - I’m in Lincolnshire.
I used to think I had a really great ms nurse til the last few weeks. Saw a new neuro who decided I needed to get put on dmt, said my ms nurse would talk me through the various options, then told me, “oh, your ms nurse is no longer in the area and there isn’t another one in place yet!”. First I’d heard of it. Had no letter, nothing. I’d seen the guy 2 weeks before and he hadn’t even given any sign of leaving - even told me to call him after my appointment with my neuro! So now, 2 months down the line, still no new ms nurse in place, no dmt, and my neuro is chasing it up to find out what the hell is going on! Don’t they realise how important it is that we have continuity with care! They make out when you see them how they are there for you, and you just have to pick up the phone then they dump you right in limbo when you need them the most!