I am at a simillar stage of diagnoisis as yourself and this week had a paid appointment with a private neuro. I met the private neuro and he ran through my last years tests, MRI scan, lumbar puncture and bloods. He asked me how I was and how I have been feeling since my original episode of not being able to move my right arm for a few weeks. I told him that apart from the odd strange thing happening, I had been pretty good, or at least as good as can be. (I know that whatever you say to these neuros, they will ignore most of it and you end up sounding like a hypochondraic, so I prefer nowadays to say not much at all) We all know what we go through on a daily basis and these neuros really haven’t got a clue!!!
So after a brief discussion about previous symtoms and clinical evidence from my doctors notes, he told me that if I would have presented in his NHS clinic last year, with the symptoms I was showing, with the results from my MRI, which showed multiple lesions of my brain and two of my spine, then he would have started me on a DMD drug there and then.
I never went to his clinic but to a different cinic and saw a different neuro who took a different approach and followed the guidelines that IF i were to have a second symptom simillar to my arm going numb for a few weeks then I would get the diagnosis. This neuro put me through a lumbar puncture and has arranged for me to have a battery of electrical sensory tests carried out as well. The downside for me is I have to wait (god forbid it doesn’t happen) for a second disabling episode.
Anyway, as things stand, the private neuro wants me to have a MRI with contrast to see if there is activity of demylation at present. Hopefully within the next 10 days. He feels that I do have MS, but it is MILD. Therefore, I have a funny feeling that this neuro is going to fob me off along the same path as the last one and leave me in limbo as well. This private neuro is from a “hit it hard, hit it fast” school of thinking, so should/ might offer me treatment (hopefully).
Don’t get me wrong, I don’t want to have MS, but I DO think that I have it , the results are in the tests I have had and I just need to have an answer sooner rather than later. I am sat on a critical illness policy which is going to payout hopefully, once I get the definitive diagnosis from a neuro and hopefully, with the chance of going on a DMD I can try to fight back against any nasties which I might encounter in the not too distant future.
Sorry to ramble, but good luck.
PS - if you do require prescriptions for medicines such as DMDs, then i’m pretty sure that the NHS covers anyway and you don’t have to pay.