Expecting too much?
Hello!
Hope anyone reading this is doing ok. I’m a little concerned about what I should be expecting from medical professionals regarding my ms. I had an MRI and neurologist said it was most likely MS and had a lumber puncture to confirm. Had a letter from him a few weeks later saying that yes it was MS and I was being transferred to an MS specialist neurologist and an MS nurse would be in touch. She called today and I explained that I know nothing except that I have it, no idea what type etc but I am finding things very difficult. Her suggestion was that she would send some leaflets out in the post. When I asked if there was someone I could see she (a little begrudgingly) said there’s a clinic I could attend at the end of April and I could talk to them then. I really don’t know if I was expecting too much or making more of it than I should? Is it just a case of diagnosis and then you’re left to get on with it?
Any knowledge would be much appreciated!! Thank you in advance!!
@jo_buckland - pretty poor IMHO. You may want to consider changing hospital and neurologist - if that is a possibility. It depends on where you are located. There are NICE guidelines for the management of newly diagnosed patients. This is a general link: https://www.nice.org.uk/guidance/conditions-and-diseases/neurological-conditions/multiple-sclerosis though you'll need to drill down. The MS Society, the MS Trust, and others all have FOC helplines. It is all new and somewhat overwhelming, you have to learn the system - though you shouldn't, but that is another story - to get the best from it. Best, Dominic
Hi jo_buckland We don't think you're expecting too much at all. All Shifters have heard such horror stories. No one should be dxd (diagnosed) by letter, even if you have a 'mild' form of ms, all ms is progressive and should be treated as it is, a progressive, life changing disease that is not going to get any better by itself or go away 'and die quietly in the corner' though at times we feel that that is what some medical professionals would prefer. You hopefully have come to the right place, bit difficult to help as much as we'd like to at the moment as you don't appear to have been put on any DMT ( disease modifying therapy) yet the correct thinking appears to be to hit the ms hard and fast in an attempt to slow down progression. You need to get in touch with your neurologist, via his secretary and make a nuisance of yourself, if necessary change neurologist , you are entitled to, Its your life, your future, do anything and everything that's needed to have a good outcome. You only have one life and you should do everything possible to make it the best one possible. Good luck and keep posting.🙏🏻🤞🥊😍