Hi everyone, hope you’re as well as can be and all that…
I was helping with a collection at a local supermarket today which we also use as an awareness event for anyone who has or is interested in MS.
I was talking with a chap who had recently been diagnosed and he told me that he was told - at work by his MS nurse who was ringing to make an appointment! He asked “have I got MS then?”. I can’t belive that people are still not being given this information in person by their doctor or Neurologist. He has changed over to the hospital that I attend and seems to be getting better treatment.
Things to do with diagnosis do not seem to be improving out there.
Hi Wendy, I quite agree that’s a terrible way to be told you have MS. It’s bad enough as it is coming from someone face to face but over the phone is unexceptable. Am pleased to hear that they have now changed hospitals. I wish them well and you for caring.
-not only is diagnosis being given in an underhanded manner, gp’s sometimes say things which aint funny when facing a life of uncertainty like my ex doctor: oh well your hardly a spring chicken are you!!! Considering I was blind in my left eye, had major fatigue, limped like nobodys business and the headache from he.l, I thought him very insensitive. I was only 49 years old at the time and attending uni in the hope of a better future for me and my children.
Its about time neuros got their act together and all went back to school to learn compassionate communication skills on how to deal with patients. Talk about ignoramouses!
Uggh. Kind of like my story? I returned to my GP, who was being covered for by a locum. I asked if my MRI results were back and turned his screen around and said “read that. That is what the hospital sent me.” It said diagnosis of RRMS and I then asked if that meant I had MS he replied “looks like it…says so there”…what a lovely kind and sensitive was of telling me…not :(((
When I was told I had MS, I’d been admitted to hospital, in A&E they said they thought I’d had a Mini Stroke or MS, I had no clue what either meant. I speant 2 weeks in hospital, being prodded and poked by every student doctor in the place as they didn’t ususally see neuro cases there. I had an MRI 1/2 way through the first week, middle of the next week, the consultant neurologist (I’d seen him once, telling me I needed an MRI) came over, stood at the end of the my bed, told me ‘you have MS, there’s no cure but there may be some treatment if you need it. I’d recommend that you go away and get on with your life but in the meantime I’ll pass your MRI over to anothe consultant who is in the middle of a trail, you might fit it’. He then walked off and left me totally dumb struck. The nurse on the ward wasn’t at all happy with him and told me that he should have warned them they could make sure I wasn’t on my own.
4 weeks later I was back in with another relapse, the Neuro said he thought this may happen but hadn’t wanted to worry me!!! When I finally saw the othe neuro (after 5 relapses in 6 months), he told me that it was inevitable from my scan that I would have very severe MS and should have been referred for DMD’s as soon as they saw the scan!
I realise that telling me at the start they I had it so bad may not have been the way forward but surely giving me some information about MS and what to expect would have helped me realise that life would never be the same again.
Thank you for your replies, Sue, Amanda, Bren and Janet. I am a little surprised and very disappointed by the doctors.
My daughter works for a local Grammar school and when the girls say they want to be doctors, my daughter advises them to do some voluntary work with sick or elderly so that they can learn to care as well as getting their Science A levels. The girls seem very surprised at this.