I’m trying to decide between two private neurologists - to confirm diagnosis, talk about prognosis and recommend any treatment.
At first, I was planning to see someone in London. It was hard to find anyone more local, so I just looked for MS specialists who seemed to be really engaged in treatment and research.
However, when I mentioned to my local MS team that I was thinking of going private, they seemed to think that nobody would be prepared to see me “out of area”. More alarmingly, they did not seem to have any system in place for follow up if a non-local private neurologist recommended a DMT. My impression was that they might just ignore any recommendation or insist I also go through their system - they were very negative about the whole idea. And they eventually suggested I see the one local MS neurologist who does do private.
However, when I looked up this local man, I found very little information about him, little to suggest he is really engaged in terms of keeping up with research developments, trials etc. in the way the people I’ve found in London are.
So now I have a dilemma. I can get an appointment quite soon with this local chap, he would have access to my records, and would know how to plug back in to the local system. If I need ongoing treatment, it would have to be monitored/delivered locally, I presume.
However, part of me would still try to see someone who really does seem to be at the top of the field. And if I have ppms, as I suspect may be the case (no obvious “relapse” pattern), then maybe there will be no ongoing treatment for now…
If you went out of area for a consultation, what happened with any subsequent treatment? Did you continue to have non-local treatment, and if so, did you do this on the NHS? How feasible was that in terms of needing blood tests and so on? Or did your local MS team pick up on recommendations?