Had my face to face with the neurologist today and she’s isn’t starting me on treatment but wants to wait and see how I progress!
Everything I’m reading and listening to from MS specialists says my results meet the McDonald criteria and show:
DIS (dissemination in space) I have lesions and demyelination in two areas of the brain plus in the cervical spine at C5.
My CSF was also positive for oliglaconal bands which shows DIT (dissemination in time)
With this criteria the medical advice is for early intervention with DMT’s as progression to further disability is more assured.
So I’d rather not wait for another relapse and what that may bring, I’m already not able to walk without crutches so want them to be proactive not apologetic and reactive!
I’ve gone to my GP who is going to make a referral to another neurologist as she agrees with me and wants us to complain through PALS.
Also looking into seeing a neurologist privately but not sure of the costs yet?
Great to hear that you are seeking additional info and checks by another medical professional. Sounds like your GP is being a good advocate. Good luck
Mick
best thing i ever did was going private. it did not cost the earth and i am still with my neurologist from 2006 i see him on NHS now too. so go for it. I hope you can afford it as it will be the best thing for you going forward.
How old are you just out of curiosity? because with your results i do not understand why you should need to get a second opinion. xxx
Good for you. I was lucky enough to be put on my first DMD 20+ years ago shortly after dx. While I grumble about what I can no longer do, I’m very, vey grateful that I’m as well as I am, and that is due in no small part to proactive and supportive medical advisors and high-efficacy DMDs. So knickers to ‘wait and see’, say I! It’s your CNS being shredded, not the neurologist’s. This is worth making a fuss about.
Good luck.
Alison
Only reason why i asked was normally well (in my case) i was fobbed off for years as born in 1951, cant possibly have MS lol.
At 43 its a normal age to start with MS, so I think you should stand your ground on this, and say how much more do you need. get your DR as your advocate. You should be on DMD. I saw 2 different neuro for second opinion both were supposed to be EXPERTS in their field was a waste of my money. they had no clue, tried to tell me i didnt have MS and neither one of them had seen any of my notes.