My name is Lynn and last month I was diagnosed with a mild form of MS, following an MRI and a couple of years of symptoms. I was referred for a lumbar puncture in August, which I am still waiting for. My consultant said that she would give my details to a MS nurse but I haven’t heard anything more and that was nearly a month ago. Is it usual to have to wait that long?
Many thanks
Hi there. Would I be right in thinking that you have had a formal diagnosis of MS on the basis of the MRI? And that you are about to start treatment or have already started?
If so then perhaps there is no need for a lumbar puncture? My diagnosis was on the basis of an MRI and symptoms
The doctor still wants to do the lumbar puncture, although she says it won’t change the diagnosis. I am not starting treatment until after the lumbar puncture, but am due a follow up appointment in December, so that might change. I had a VEP test yesterday
Blimey. I know I can get a bit assertive with medics. I made several phone calls to neurology when I was waiting for what seemed like an eternity for my post MRI formal diagnosis by the neurologist. I’m pretty sure I would be asking what’s the purpose of the Lumbar , why are you recommending I have one , and why can’t I start treatment now - especially as the general opinion is ‘the earlier the better’.
Initially I was going to wait, as my symptoms aren’t bad, but after the doctor said " the earlier the better" I agreed to start treatment. But when I got her letter it said that I wanted to wait until after the lumbar puncture to start treatment. Not wanting to make a fuss, I decided to wait. I was expecting to have heard from an MS nurse before now though
I think that I would be phoning and emailing by now. Things can get lost in the labyrinthine NHS
Don’t be afraid to phone and chase, they are generally really busy people so it is possible for them to forget.
I’d question why they think you still need a lumber puncture though. All it shows is whether you’ve had previous relapses, and can help when they’re deciding on a diagnosis but if they’ve already diagnosed you it seems a bit unnecessary. It isn’t pleasant when it goes well, let alone if they need to try a few times, so if you can avoid it I really would! The priority really should be getting you onto some disease modifying therapies, you want to try and keep your symptoms mild for as long as possible. Good luck with it all:)
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The neurologist who diagnosed me wanted an LP too, even though everyone was already pretty sure what the trouble was. He said he liked as secure a dx as possible, and that made sense to me.
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Same I was diagnosed before lumber puncture but they still wanted to do it
Diagnosed early Oct , seen ms nurse couple of weeks ago who told me I probably won’t be able to get on a dmd untill after Christmas, got appointment with nuro in two weeks will see what he says
Thanks for your replies. I spoke to the MS nurse on Friday, who said they hadn’t received my referral but it was ok, as they know about me now. She was surprised that I hadn’t had the lumbar puncture yet, but agreed that it wasn’t too important. I have an appointment to see the nurse on 22nd.
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The best advice I was given about seeing the MS nurse was to write down all the questions and queries I had and take it with me. You wouldn’t believe The amount of times I got home after seeing the nurse and realised I hadn’t asked any of the questions that had been stewing around my mind for months!
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Thanks, that definitely seems like a good idea.
Hi Lynn
Like you I I have recently been diagnosed . I’m still trying to get my head round this. But hey onwards and upwards.
I’m 52 and looking back there were signs but being a busy working mum of 2 I just got on with things.
Hope you keep well
Morag
I would phone the consultants secretary and ask for the number of the nurse. Call them and tell them what you have told us and see if he/she can move things along ref the treatment.
Thanks, I hope you are too. I am just a little older than you at nearly 56 and initially wondered if my symptoms were part of the menopause
I spoke to the MS nurse and have an appointment next week.
I’m through the menopause and out the other side I hope, but you never know. I never even thought about them being connected actually, maybe they are.
I was really lucky in that I had my diagnosis and started treatment within 3 weeks of that and I met the MS nurse literally the day I got my first infusion of Tysabri. Been a whirlwind of the last few weeks.
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Hi Lynn,
I never got the result of my LP b4 too, I was just told MSers usually have a higher content of T-cells in their spinal fluid, I think they just use it to confirm your dx of MS; I was diagnosed from a fuzzy MRI scan 24 years ago.
Regards,
JP
That is interesting, thanks