My neurologist was completely non committal to my diagnosis and consequently terrible for follow up referrals/professional help. My MS nurse (who I had to search out myself, 2 months following diagnosis, my neuro was totally unhelpful) was the one who gave me all the support I needed and continues to now. I immediately got the ball rolling for a new MS specialist neurologist. The best thing I could have done and I can see how unhelpful my original neuro was.
I would also say your letter is not a confirmation either, but when I was diagnosed my clinic letter said ‘I think probable ms’, What does that mean? It turned out those words were my diagnosis! The neuro explained he wanted to see me for the next five years and monitor me, whatever was going on was mild and sensory, even though I could no longer run, walk distances with confidence, start to use a walking stick, have drop foot, cycle any distance, grip properly and had new symptoms cropping up every few months.
I asked about DMT’s he said I didn’t qualify (until he decided to review my case in Dec 2015, the same week I got my new neuro referral). After reviewing my case, he offered me first line DMTs, I refused to take them until I saw the new neuro last week, he responded saying, its unlikely you will get offered anything different.
I see my new neuro last week, she thoroughly examines me, takes close interest in nearly 10 years of my medical history and tells me: You have RRMS, its been very active, I would like us to treat it aggressively with Tysabri!
My advice is to chase up that neuro appointment and if it does end up being positive for MS, make sure you get an MS nurse and an MS specialist neurologist (unless you are 100% happy with your current neuro, it is so important that you have a good one)
I must let go of the anger I hold towards my old neuro! In the meantime, best of luck, be kind to yourself and apologies for rambling on