Hi, I have suspected MS and I am under an NHS MS neuro who has been monitoring me for the last year or so. I have many MS type symptoms… I have slowed evoked potentials on my lower limbs, non specific lesions including a new one in December. I also have TN which may have been caused by a non specific lesion in that area. I have neuropathy symptoms in my feet like tingling. I could go on, I know many of you have been there! However I am not diagnosed yet. I just don’t quite have enough to fit the macdonald criteria. Interestingly my insurance did pay out as their criteria was less e.g. 2 separate episodes etc. Which was signed off by the neuro. Question is does anyone know if suspected MS is sufficient for priority group 6. I could have it, but we just don’t know yet, and for many it takes a few years for it to out. I would have thought it is best to be safe and sorry and put people like me in that bucket. I also had 3 weeks of steroids in dec/jan just gone, and 7 weeks of steroids in july/Aug 2019. My GP practice nurse has said I do not fit the JVC criteria and is blocking and I don’t know whether to escalate to the GP. It would be helpful if anyone knows how the guidance is supposed to be read? Thank you
I believe the JVC criteria is based on referrals by the GPs. So in your situation I’d escalate to the GP. Depending on your age of course, and how fast your local area is racing through the vaccination program. If you’re only speeding things up by a matter of a couple of weeks, maybe it’s not worth it?
In the meantime, stay away from people, make sure your whole household is sticking to the rules and try to stay at home as much as you can.
Thank you Sue. I’ve spoken to the practice nurse this morning and she is doing a review. She clearly wasn’t somfortabke that probable MS counts and said it is because of the various drugs individuals take for MS, but I don’t believe this is strictly true. She said I might cross the line as I had 4 weeks of steroids in December and January just gone. Awaiting a call back. It just feels like a technicality issue. As you say it may just be a matter of weeks difference anyway. I am 47 though so I am quite a bit down the list if my various issues don’t have me cross the line right now.
Why not write to the GP you know best, or the senior partner and explain why you feel you are clinically vulnerable. If you were to use the initial post you wrote to us here as the basis of your letter. Reading that (and adding in that you’ve just had steroids) made me think you should be classed with the MS diagnosed group.
You could try asking your neurologist to support you in this if there’s anyway of getting help from him/her soon enough to make it worthwhile.
Best of luck