Hi there,
I was ‘diagnosed’ of sorts in 2021 when i thought i’d hurt my back! Apparently, i have remitting relapsing MS and the dr thinks I’ve possibly had it several years. I was very shocked and upset when i learnt it is taking over 3.5 years to be seen by the MS team in Birmingham as ‘newly diagnosed’. I struggle to get good solid answers to my questions and quite often feel on my own, accept for a brilliant husband! So I’m hoping joining the forum will help me gain a better understanding and have people that i can ask questions of. Thanks for reading, have a good weekend. I’m sure I’ll be back very soon.
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I don’t know what to say - that delay sounds extraordinarily awful rather than just the plain standard awful that we see all too often.
Were you formally diagnosed by a consultant neurologist under whose care you (presumably) still technically are? And was there no follow-up? No talk of treatment or anything? What does your GP have to say about it all?
Hello,
Sorry for my slow reply.
In April 2021 I went to see the neurologist with hubby, both of us still thinking i must have hurt my back quite badly as no one at any point said “I think you might have MS”. So in his office he asked me to and i quote “tell me all about it” and so innocently i started to tell him about my back injury to which he bluntly replied, “we’re not here to discuss that you have MS”… thanks!! I had a lumbar puncture done by him which did not go well and i ended up in A&E in hospital for 3 days as it was apparently serious. That neurologist did say i Could see him again if i wanted / needed but i gave up as his secretary was really quite rude. I do have an MS nurse who i can see when i can pin her down.
Your comment about is my dr aware of this, no he isnt really but you have spurred me on to ring the surgery and go and have a good chat with him, so thank you for that.
Thank you for replying and have a good day.
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I am sorry that you have had such a bad experience and hope that you can get played back into the system soon and start getting some better support.
i need some help and i’m wondered if i can et a assincece dog. does anyone know any good sites? i’ve had to start using my stick. i really didnt want to