Hi All,
I wrote a while about my MS Nurse.
I lost my husband in January and at the start of this month got knocked down and the car ran over my legs twice!!
Since the Road Accident the pain in my legs has gone up ten fold. So rang the MS Office on Fri 3th MArch. On the Tues (11) the OT rang me back and said she would get physio organised for me and get the Nurse to ring me on Thursday (13 th) after her break.!! Well I am still waiting for the Nurse to ring. In the meantime I have been to the GP, mostly about the pain in legs and for them to review the legs after the accident.
I have now got the GP involved to get in touch with the Nurse!! Hope she might have more luck than me. What does someone have to go through to get help!!
I celebrate having had MS for 7 years tomorrow!! I have seen the MS Nurse 3 times in those seven years and that was just after diagnosis. So probably not seen her for 6 and a half years or over!
Yes I am frustrated!!
C x
Hi Cindy, what a palaver hun and very, very unprofessional!
I dunno, really, I despair at some stuff folk are subjected to.
luv Polx
It’s so frustrating isn’t it. We hear about these wonderful beings otherwise known as ms nurses who see patients, review patients regularly, and are a source of advice, and reassurance and help and support. Then you discover the reality is very different for many of us. I was diagnosed 8 years ago this month, possibly tomorrow too,it was the twenty something of March, an ms nurse very graciously granted me 10 minutes of her time soon after when I was in hospital for iv steroids. Since then pretty much sweet nothing! I haven’t telephoned often, IF they call back I have usually been fobbed off, except once, quite recently when I got a referral to a continence nurse. Good luck! xx
It’s so frustrating isn’t it. We hear about these wonderful beings otherwise known as ms nurses who see patients, review patients regularly, and are a source of advice, and reassurance and help and support. Then you discover the reality is very different for many of us. I was diagnosed 8 years ago this month, possibly tomorrow too,it was the twenty something of March, an ms nurse very graciously granted me 10 minutes of her time soon after when I was in hospital for iv steroids. Since then pretty much sweet nothing! I haven’t telephoned often, IF they call back I have usually been fobbed off, except once, quite recently when I got a referral to a continence nurse. Good luck! xx
Sorry to hear what you have been through ad are still gong through. If anything, this is a time that you need help and support. I think it’s like a postcode lottery regarding what care is out there for people. All I can say is ask for advice on this site as I have read only positive things. I wanted to believe my MS Nurse was really concerned and would give me answers and help that my neurologist didn’t seem interested in doing but now I question my instinct. I emailed her on the 11th asking about sorting my prescription out after I looked into what was offered and had an explanation from my GP - no answer yet! I had a real bad weekend so I tried emailing her on Monday morning - no answer yet! I was in pain and felt like banging my head on the wall - just as well I tried things myself to ease the symptoms because apart from dx and initial 3 DMD’s I have had no joy with either of them.
i have a diagnosis of benign m.s, although it doesnt seem very benign to me!, should i have an m,s, nurse?
My MS Nurse rang up last week and is coming to see me on Wednesday!!!
She got a call from me in March and I also got the GP to get in touch with her. I also complained about the treatment I got from the NHS when in hospital after being fun over!!
One or all of these has worked!!
She blamed my phone number being unavailable. Yes I had got rid of one phone number, but she had the office number and as we worked from home!!
See what Wednesday brings
C x
l hope all goes well on Wednesday for you. Try not to show your frustration and anger - albeit quite understandable - as you do need to get her on your side. That doesn’t mean you don’t tell her exactly how you have been feeling.
lts 32 yrs now -since l was diagnosed with SPMS - and l still have not seen a MS Nurse!!! l did go 26yrs without seeing a neuro. l do have access to a wonderful team of district nurses who come to me regularly because of my SP Catheter. My next appointment with a neuro will be July - 18 months from the last time. They have already postponed it 4times - so l am not expecting the July one to transpire. Not that l have ever seen a neuro who knows much about MS. And l get 5mins tops - before they say l will get an appointment sent to me for 12months time. This is after sitting in the waiting area for over an hour. Never seen the same neuro twice.
lronically, my ‘vet’ discusses my MS with me whenever l see him. He follows any new research that is going on. And he is the only one who can tell me what is ‘occuring’ - explaining to me what is causing my problems. He even jokes with me - by calling me in to his surgery - with my dog - and saying ‘‘Can you limp this way’’ as l struggle to get to my feet and stumble in with my rollator.
Laughter is the best medicine. - No side-effects - unless you giggle too much and wet yourself.
Seriously though - l do hope things improve massively for you.