I haven’t posted for ages but still come on to read posts. I will give you all a little back ground on me! Had MRI which showed lesions consistent with MS, then told I need a Lp which was done in jan I still haven’t been back to neuro as he went on annual leave and sick so all appointments cancelled. I went to the docs to see if they could give me results which they did, basically they are within normal range with only one ob band, so all good there, letter to doctor said still want to see me in his clinic. My neuro is at a hospital nearly two hours away so when I last saw my doc I asked if he could transfer me to my local ms specialist which he wrote e mail to him there and then asking for transfer. The confusion I have is this - I now have a appointment at my local hosp mid June but with a MS nurse? And one came through with neuro 2hrs away late June. I have phoned local neuro secretary and she can’t understand why I have a appointment with MS nurse before seeing the local neuro! Do I keep both appointments with different trusts, and why would I be seeing a ms nurse? Oh I am not diagnosed with MS. Help, confused:)
Certainly sounds like a bit of a mix-up.
If I were you I would try and contact the ms nurse and ask her/him if it’s worth keeping the appointment while the other neuro appointment is so close. I would definitely not cancel the neuro appointment. You need to know what he’s got to say about the LP results and if he thinks it’s MS.
It’s not all that unusual to be refered to an MS nurse without a dx of MS. If you have symptoms of MS, even though they can’t get the evidence to dx, they still sometimes refer to help you with symptoms. As you know, MS can be extremely difficult to dx, so having an appointment with MS nurse does not mean you definitely have MS.
See what the nurse says, and when you see neuro you could mention then that you want to transfer to your local hospital.
Pat x
Thanks for fab advice pat, I will try get in touch with the nurse and see what she says. I didn’t know you could see ms nurse with no diagnosis, so that’s good to know, however I do think they have just messed up! The waiting is bad enough without things getting messed up as well. Again thanks x