Hi I’m not sure if I have put this in the right section or if anyone can help. I’ve recently been diagnosed with MS but not sure what stage it is. I had what I think was a flare up down left side of body loss of sensation pins and needles etc GP referee me to a neurologist in Nov 2013 however by time referral came through the symptoms dissapeared so didn’t have the MRI and though nothing more. Had similar thing happen in May 2014 and dr though it was trapped nerve X-ray was clear. Then it happened third time two weeks ago and was sent straight to a&e for MRI where is showed up lesions on both sides of brain and down spine but the MRI also picked up something called cerebellum tonsil descending 14mm below the magnum forum chiari type 1 which could give same symptoms as MS. Anyway I saw the neurologist last week who said it is MS but wants to do the lumbar puncture also, my question is does anyone know if I definitely need to have the lumbar puncture and is if safe to have it as I have this cerbellar tonsil condition too? I’ve not been referred to a neurosurgeon yet,
many thanks in advance
MS isn’t “staged” anyway, but there are different types. If you’ve been having distinct flare-ups or episodes, from which you’ve recovered to a greater or lesser degree, then your type is almost certainly Relapsing Remitting, or RRMS, which is the kind about 85% of people - the vast majority - are diagnosed with.
It is possible to be diagnosed without a lumbar puncture - I was - although it will probably slow things down a bit, as they will have to wait for other evidence to confirm your diagnosis.
I’ve no idea whether it is safe to have a lumbar puncture with the other condition you’ve described, but I’m sure you wouldn’t be referred for one unless it was, and it would do absolutely no harm to mention it when you got there, too, just in case there was any sort of bureaucratic oversight - which I’m sure there wouldn’t be - but you can’t do harm by speaking up - it may just prompt somebody to double-check.
I was diagnosed over five years ago - it does NOT mean you’re going to die, which is why they don’t go in for “staging”.
Hi Tina thank you for your reply. I think I’ll speak to the neurologist when I see him about the other condition I’ve not had three appointment come through for the lumbar puncture yet so have some time to query this. I think my consultant said he couldn’t say if it was relapsing MS as its should be noted on my history that I’ve had 2/3 flare ups in two years. So very confusing but this page is helping X
Yeah, it can be frustrating, as sometimes there are flare-ups that you know you’ve had, but they can’t count them, if they weren’t properly diagnosed or recorded at the time.
In my case, it was as much my own fault as anyone’s, because I hadn’t always been to the doctor about them. My neuro did believe me that they happened, but he wasn’t able to take it into account as far as diagnosis was concerned, because there weren’t any witnesses apart from me! It’s not that they think patients are lying, but people do get confused or mistaken sometimes. Without it being confirmed by a neuro, it’s impossible to tell if they’re right about what they thought, so it’s not safe to base a diagnosis on it. They have to wait 'til they’ve seen for themselves.