Hi, i had to send a urine sample in yesterday to my surgery, and the nurse i see a lot (NOT MS), said it was positive (i have dip sticks at home so i knew it was lol, I always check as i dont want to waste their time).
Anyway in the conversation Steph said to me, oh got a letter from Neuro you have been referred to the MS nurse at the hospital, so my question is what is an MS Nurse?
Hi Crazy Chick, it’s a nurse who’s had specialist training in MS symptoms and issues.
They can be incredibly useful & can usually see you for longer than a neuro. It’s worth making a list of any questions you have. She/he can also make referrals to other specialist nurses…eg bowel or bladder nurses.
Pat xx
Hi,
I’ve found my MS nurse invaluable. She too is based within the hospital neuro department. As they specialise in MS they have a broad and everyday knowledge of this condition.
I needed advice re meds for worsening neuro pain and increasing fatigue spells. She recommended that I see my GP about additional meds, e.g. Amatryptaline for pain at night and Amantadine or Modafinil for fatigue. Without her knowledge and that GP isn’t really up to speed on MS meds I’d be really struggling with feeling worse and less able to enjoy my days when I can. And not able to be clear with GP. And, as Pat says they can refer you to others specialist areas to meet your needs.
The longer you have PPMS the more knowledge you gain!!
Hope this info helps.
Anne
My MS nurse is brilliant, I can email her when needed etc. She’s even visited me at home for a test. She just gets it, I hope your nurse is good support too
Sonia x
Hi thanks everyone, i doubt i will see one quickly, and i suppose i have been coping on my own so long, it will be odd to be able to talk to someone specifically about what worries me.
Will let you know when i get the letter for an appointment, I am looking around 2020 ha ha, knowing my luck lol. xxxx
Hello from New Zealand,
Ive only been back home here a few months after being diagnosed late 2015 and my MS nurse(s) are the best ever!
They are community nurses in that they don’t work in the hospital but act as a community resource of information, support and education, and even make home visits. They also organised a holiday camp 3 weeks ago to enable people like us and our families to have a nice weekend at a mountain spa resort at a very affordable price. When I was in hospital last week 120km away from home and family, the MS nurse made two visits and called me every day. They were able to support me through a very scary seizure and follow up with therapists for bladder and swallowing issues, the hospital staff are often too busy and don’t have the specific MS experience and I wont even mention here about the issues I had with the Neuro team (not good). To cut a long story short - MS nurses - they are the best!
A Ms Nurse is one that doesn’t want to be labelled as being married or single.
Ms Pat xx
(Actually I always find that a bit weird when giving my name to official people. They say Miss or Mrs and I say Ms & then have to spell it out M.S!)
Yoh!
Could write a book on my path to MS diagnosis. My first symptoms was persistent lower back pain and trailing of my left foot. I had a previous history of chronic back pain but on this occasion I obtained a diagnosis of MS but still do not have any specific advice as to whether or not I need a lumbar puncture. Over this last 6 months my neuro is still carrying out MRIs to find out what causes my back pain and stiffness which at times is excruciating.
My GP has been of limited help. I understand they (GPs) are over loaded with work but wish they could be more helpful with treatments rather than just affirming you have MS.
At outset I was proscribed Gabapentin, then Dulloxetine and numerous scripts for co-codamol. All these medications were of little help but recently I was proscribed Baclofen which I have found to be best of all. Medics seem to be quite often just using trail and error to see what works best for each patient.
After Easter vacations I am going to visit my local NHS MS Nurse as I have been told they can be much more helpful than GPs. I suggest those in ongoing doubt should try and get a similar appointment as they could help with ongoing treatments and in particular pain management.
Wish I could end on a more positive note but MS patients quite often have to really push to get answers and help with their conditions.
Hi Bracknagh,
You are quite right. My GP said to me that he just does what he’s told by my MS nurse. He obviously has a lot of respect for her. She even won a Queen’s Award for Nursing a few years ago!
I may unlucky getting MS but I’ve hit the jackpot when it comes to care. When the chips are down the NHS really comes up trumps. I love 'em.
Anthony
I love my MS NURSE they are great got me lots of stuff sorted bowel specialist and my supra pubic catheter as I said love her to bits.
Don XXX
I love my ms nurse too. I see her once a month and she is great and has really helped me loads too.
Polly x
Reading through this thread most people seem to have positive experiences with MS Nurses.
Several years ago when my MS was determined to be PPMS the Neurologist discharged me explaining there were no effective treatments etc. I was given details of the MS Nurses if there were any problems. I haven’t had much contact with them.
However a couple of weeks ago I wanted to discuss something. As usual I got through to an answering machine which instructed me to leave my name and number and they would get back to me although it might be a day or two. Well its ten days later and still no call, I left my mobile number as I have it with me at all times.
Im not going to ring them back as I feel they have let me down and dont feel there is any support from them . I have had to make an appointment at the GP instead
I am still waiting for an initial appointment. x
That’s really awful Oscar. You really should complain.
I guess it’s the same with everything…when they’re good they’re very good … and when they’re bad they don’t even bother phoning you back!
Pat xx