Feeling alone and forgotten
I'm 39 F and was diagnosed in my late teens.the neurologist at the time told me I had benign ms and that was it. For over 20 years I've had nothing that has hindered my way of life. I've gotten married had a child and basically forgotten all about it! This month I noticed my right leg was dragging and everything on my right felt tight. I remembered numbness but not this. Went to AnE and spent 8 hours for nothing (UK) I still haven't been referred to an ms specialist, never had treatment or any kind of care! I finally pushed for an MRI but what happens afterwards. I feel like once I was diagnosed I was forgotten about! I have no one to talk to and am tired of putting a brave face on everything when I'm petrified. My husband is amazing but he has so much on his plate already and I don't want my child to worry either. I've looked for support groups but nothing near by (I live in the west midlands) what can I do and where can I turn as getting my GP to help is like pulling teeth
I’m sorry you have been forgotten about. Do you know if you’re having an MRI on your brain or spine? I had both and a lumbar puncture for my diagnosis x
I'm sorry to hear that.PALS (Patient Advice & Liaison Service) may be a good place to start for what service you should be getting- try https://www.wmas.nhs.uk/get-involved/your-experience/pals/ Then I'd recommend emailing your neurological department with your concerns, copying in your GP and (crucially)PALS. Chase them up and become your own advocate as it's easy to be overlooked otherwise. Best of luck