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1st neurology appointment - should I have a lumbar puncture?

Hello all,

I had my first neurology appointment yesterday with a very nice doctor who answered all my questions and gave me a thorough examination as well as taking a detailed history. As my dad has recently been diagnosed with MS after years of various symptoms, this is something that they were very interested in. I’d had a head and neck MRI prior to the appointment and this was all normal, although the doctor wants me to have another MRI going further down just to be sure. From the examination things weren’t ok, but I appreciate that doctors need more than this to go on. My symptoms include fatigue, double vision, weakness and more recently poor co-ordination and balance.

Anyway, the doc spoke about white cells attacking the coating around and also said that they MS is something that isn’t diagnosed unless someone has had more than one episode, as some people will only ever have one. They want to do a lumbar puncture to check for white cells as they said there are treatments if this proves to be the case that can help. I can also wait and see if anything else happens and be referred back then. This all makes sense to me and the doctor explaining it all very well.

I’m just not sure what to do, whether to have the lumbar puncture or just to wait and see if anything else happens over time. I’d appreciate any thoughts from anyone.

Thank you in advance.

Hello Butterfly_cake, I’m glad to hear you’ve had your appointment, but sorry to hear your father has been recently diagnosed. You know you’re not alone in that, there does seem to be a small genetic factor with MS, several posters on this forum have reported a relative with the condition.

Regarding a lumbar puncture: It was a very long time before I agreed to have one, which in due course came back normal. However, I was still diagnosed with MS shortly afterwards when I suffered a relapse and new lesions appeared on MRI scans - you see, the condition really is erratic and unpredictable. I would say to take your time in making your decision, and wait until you’re sure, but that does seem rather obvious.

Ben

Hi Butterfly-Cake,

Glad he (or she!) was nice, and it all seems to have gone pretty well.

Re the LP - I declined, and although I did have to wait longer for a confirmed diagnosis, it was only a few months, and I didn’t even have to wait for a second attack.

What they did was just book me a follow-up MRI six months after the first, and they could see from that there was new activity, even though I hadn’t had new symptoms. So that was accepted as the smoking gun - diagnosis made.

If I’d accepted the LP, there was always the possibility that, like Ben’s, it would have come back normal/neutral anyway - in which case I’d still have had to wait for other evidence - which wasn’t very long in coming.

Tina

Thank you Ben and Anitra for taking the time to respond, I appreciate this and your valuable comments. Interesting too considering you had differing experiences in having/not having the lumbar puncture. It doesn’t sound nice to go through, and as Ben experienced there is always the possibility nothing would show.

I understand where the doctor is coming from in suggesting it, but equally I’m already sensible enough to appreciate that if I go on to be diagnosed with MS or another neurological condition it’s likely I may not get any quick answers in any case. I won’t rush into the lumbar puncture and will give it a lot of thought.

Thanks again and all the best.