I was diagnosed with MS 6 yrs ago and have never seen a MS nurse. Neuro at the time said one wasn’t available. My GP is great with physical symptoms but in a small practice has very little experience (has 1 other MS patient on his books who he has never actually seen) and isn’t really able to help with for instance the fatigue and (I think) depression that I suffer badly with. Also can’t really offer advice on ‘practical’ help at home or work. Is there any way I can approach an MS nurse directly?
Hi Erimines,
I haven’t got one either, so you’re not alone!
Some hospitals let you self refer, if you’ve got a confirmed diagnosis, so try Googling and see if this is possible in your area.
If not, GP should be able to set things in motion for you (although I agree they’re a bit clueless when it comes to MS - but why shouldn’t they have to do some research for a change?)
I’ve never really bothered making a fuss, as I’m not sure I want/need an MS nurse for anything at the moment.
But if, as you say, you have needs/issues that are not being met through routine contact with your GP, it’s worth a try.
GPs can actually prescribe drugs for the symptomatic relief of MS - just not DMDs.
But some (including mine) are very reluctant to do so, unless instructed by the hospital.
Tina
Could I suggest giving your GP something to do, he should be able to find out where your “MS” specialist nurse clinic is, and refer you. Remember your GP gets a greater fee from the NHS for looking after you as you have a chronic illness (MS).
Despite what you may read on this forum, the MS specialist nurses are worth their weight in gold, well mine is anyway.
Hope you get a referral soon.
Take care.
Chris R.
I. El. (Eng). (Rtd).
I know its going to be a bad day when I get out of bed and miss the floor, today is such a day.
Because l live on the borders of two counties - postal address is one - council tax paid to the other.
All very confusing when it comes to hospital appointments and even calling out the paramedics. lnstead of the hospital five mins away -
the ambulance - if called [husband diabetic episodes] they come from hospital 40mins away.
l have been told that the MS nurses from both counties say l live too far away. So, for 30yrs - l have never had a ms nurse.
A job for your MP, they get paid enough, make them work for it.
Take care.
Chris R.
I. El. (Eng). (Rtd).
I know its going to be a bad day when I get out of bed and miss the floor, today is such a day.