I have got my first neurologist appt on Friday and he is going to go through my LP results with me… he has phoned me already to give a brief over view… basically he said they were inconlusive?! I have seen on several sights that even when there are no oligoclonal bands that MS isnt ruled out?! Is there anyone on here that has had an dx with negative bands?! I jave had a MRI and I have lesions on my brain and do have persistant symptoms since my ‘first attack’ 7 weeks ago… Many thanks Sian
Hi Sian,
Not quite the same, I know, but I’ve had a Dx with no LP at all, as have several others here. So it’s not an essential element of diagnosis. However, if you’ve had one but it was inconclusive, I’m sure it will make them more cautious about diagnosing. You’re right it doesn’t mean you can’t have MS, but if they were looking for that extra bit of evidence to confirm it, they haven’t found it yet. Only a small proportion of people with MS have a negative/normal LP, but it can happen. So unfortunately, in your case, it hasn’t taken the investigation a lot further forward. Sorry.
Tina
Hi, I had to have a LP because the neuro couldnt dx me just on MRI evidence. The LP was negative so I am in Limbo still. I have read a lot about negative bands and on the Barts MS Blog the prof there states the people with MS who have negative bands dont have true MS. He also states that a proportion of these could have been misdiagnosed. I have also heard that people who have a had one off attack (CIS) are less likely to develop MS than someone with positive bands. Some neuros will not dx MS if bands are negative yet some will. The Barts Blog also stated that the people dx with MS with negative bands tend to have a milder form of MS than people with positive bands.
The bands if positive show that the immune system is active in the CNS. If the bands are negative then the immune system is not active in the CNS and therefore something else has caused the lesion.
Whether or not you get a dx of MS or not the fact that the bands were negative is a good thing.
Moyna xxx
Hi,
i also have no bands but have a spinal lesion and a few brain lesions and have been told it is almost certain i have MS.I still wonder if it could be an MS mimic and they got it wrong
Clara
After 2 LPs with negative bands and numerous mri since dx 3 years ago my neuro in London says I have 100 % got ppms.
Hi, like Anitra, I am diagnosed without LP, I refused to have one. However, I have multiple lesions in brain and 3 in cervical spine. My neuro told me because of the spinal lesions the LP was unecessary anyway. I think this is why they are almost certain of MS for Clara14. Hope that helps.
The thing is that there are mimics of MS on MRI, so even with spine lesions the diagnosis may not be MS. Its more likely to be but not always.
I have spine lesions and have peripheral nervous symptoms but diagnosis is MS… I have a black hand in the shower that tingles and right hand has black patches on palm when I wash hand in cold water. Neuro says it autonomic nervous system (peripheral nervous system) I’ve only been diagnosed since Nov after one big relapse… I have read that MS patients who have had MS for a long time can get periperal nerve damage. So I’m not sure what’s happening with me.
It does concern me as if I go on DMT’s for MS its unlikely to help with my peripheral nerve damage…
Hi Anon,this is very interesting to me because i think i had a similar thing around the time of my relapse.Along with all the other symptoms i had such as dizzyness,nystagmus,staggering,itching.I also had extreme numbness in my hands and feet and blue nails,cold feet.My hands would go very numb at night when asleep and would ache so bad the pain was agony.
I was given the MRI scans and also an EMG nerve conduction study,they said i had carpal tunnel in both hands,never even tested my feet.This was a couple of years ago and things have improved now,although still get numb feet sometimes but i was very low in vitamin d at the time and am still unsure if everything was down to MS or something similar.
Hi Anon,this is very interesting to me because i think i had a similar thing around the time of my relapse.Along with all the other symptoms i had such as dizzyness,nystagmus,staggering,itching.I also had extreme numbness in my hands and feet and blue nails,cold feet.My hands would go very numb at night when asleep and would ache so bad the pain was agony.
I was given the MRI scans and also an EMG nerve conduction study,they said i had carpal tunnel in both hands,never even tested my feet.This was a couple of years ago and things have improved now,although still get numb feet sometimes but i was very low in vitamin d at the time and am still unsure if everything was down to MS or something similar.
I was diagnosed without a lumbar puncture too I’m afraid (they tried 3 times but failed and then I got diagnosed with a DVT so went on warfarin so they couldn’t attempt it again). When I then had a further 2 relapses they diagnosed MS from the MRI (brain lesions), history and clinical examination. Perhaps you will be diagnosed with CIS like I was at first. You might never get another attack. Good luck with the appointment.
My understanding is that it is the McDonald criteria which is used for diagnosis.
Des