Have an appointment next week - is there any point in going - I’m not on any m.s. drugs ?
Yes, always worth going.
There must be some questions you need answered. Also, if you decline the appointments you might get dropped from their list so if you ever need them ( which I hope you don’t) they can give you advice. Good to get to know them too.
My MS nurse was so helpful getting blue badge, aids for walking etc.
Hope you don’t need extra help. Maybe just go every two years but don’t drop off the list
The MS nurse i saw was a waste of time.I asked if she would support me in my claim for PIP she refused and told me to contact welfare rights.
I don’t know. On the one hand, it can help to know your MS nurse in case of benefits evidence. But they’re not always useful as jaydee found and sometimes they simply don’t know the rules so can’t help.
Personally, I know my MS nurse, and if there were something I needed from her, I’d be able to get help. But as for regular meetings for the sake of it, at this point there’s not really a lot of point, so I don’t see her often.
I saw my MS Nurse recently for the first time and found her very helpful. I’m not on any drugs either as I have PPMS and can’t take Ocrevus, but I felt that I at last had a lifeline especially as, after my next visit to my neurologist he said he may then discharge me, she can apparently get me a quicker appointment with him should it become necessary rather than going back on the waiting list. She plans on seeing me every six months. She also referred me for some physio, which I’m still waiting for (long wait list there!) and gave me advice on local MS groups and aid for the home. I guess it all depends just how good your MS Nurse is but it’s worth keeping the appointment so you can make a judgement.
i have 2 MS nurses.
one is based at a clinic in Bolton which is said to be local to me.
however i no longer drive and it would take 3 buses which is something of a huge undertaking for me.
the ring and ride service refuse to go there because it is too far away.
£20 each way for a taxi so i don’t go there.
the other nurse is based at salford royal which although further in miles is dead easy because i can ask for patient transport from them.
both nurses are lovely.
It took me a year to see the elusive MS nurse. I didnt get much out of the appointment, but i did have another appointment for six months, and went and saw another one, she was ok she wanted me to see the neuro about ocrevus so because of her really i finally got to see the rare spotted MS doctor lol.
He was great and we had a long chat.
Oh also she put me forward to see the incontinence nurse who helped me a lot with my bladder and my constipation. so yes its worth seeing one just to touch base. they can short by pass visit to neuro.
Yes definitely worth going. I see mine once a year which means I’m still in the system which means if Meds become available for Me (SP) she can refer me to a Neuro quicker than my GP would be able to. She can write letters of support for things like PIP or ESA, she’s on the end of a phone to give advice on symptoms and medication, I don’t take MS meds but I do take symptom relief medication. Jan x