Just had a call from the hospital (doc who’d requested the LP’s secretary) and she’d found my results for me. she asked a junior doctor to take a look and he said it looked normal. so, that’s a negative result for O bands i’m thinking.
so…what now?? does that mean it’s not ms???
had my MRI today and won’t get the results of that until i see neuro (still on waiting list, so who knows when that’ll be)
Hi Kisy, I’m a bit dubious about how confident you can be of this “unofficial” result. Healthy people can have some O bands, but the crucial thing is whether there is a discrepancy between how many in your spinal fluid, and how many in your blood, as that could indicate a disease process that is ONLY going on in your CNS. So unless the junior doc who was asked also had access to the blood result, for comparison purposes, I’m not sure how reliable his pronouncement is. That aside, if you have guessed right, and it didn’t show any bands at all, I’m afraid that cannot 100% disprove MS. It certainly makes a formal diagnosis less likely, as most neuros would be reluctant, with a normal LP, but it wouldn’t mean you categorically cannot have MS, as there is a small percentage of false negatives AND false positives, with LP. They will look at all the evidence combined, and not the result of any one test. I am diagnosed without ever having a LP at all, so it’s not essential anyway, if other evidence is good enough, but if I’d had one and it was clear, I think it might have made the neuro more hesitant to diagnose. Although it’s not necessarily supposed to be superior to other forms of evidence, MRI tends to be the most influential, these days. I had quite classic MS signs on MRI, an increase in lesions over six months, and a consistent symptom history. So based on that, he was prepared to overlook that I never even had a LP, and visual evoked potentials (VEP) were normal. MRI being abnormal tends to speak more loudly than other tests being normal. Tina x
Thanks for the reply. I wish I had the results in from of me. In fact, I wish this whole things was just over. A blood test came back with low b12 and I’ve got another test on thurs to check the levels again so see if the oral b12 I’ve been taking have upped my levels. I’m really hoping it’s not ms, who wouldn’t. I hope it’s ‘just’ low b12 that’s been doing this for all these years. I’ve been convincing myself it is ms to try and prepare me for the worst and today I thought I was home free. 
It’s a roller coaster ride isn’t it. The amount of times I’ve been told one thing and another, emotions up and down…not nice. I really hope you get a result soon and you know you have everyone on here for support xxxxx
Thank you 
I’ve been thinking tonight. One doctor queried fibro. I know someone with fibro and they are in a lot of pain so I dismissed it, but what if that’s what it is?? I really don’t know a lot about it.
Fibromyalgia causes, amongst other things, pain in all soft and connecting tissues. It’s like an arthritis of the muscles ( I once heard) except it’s not arthritis. It can cause probs like head fog, aching, fever, burning muscles and lethargy. Give it a google, you’d be surprised about what it can cause. Xx
I seem to get tendonitis at the drop of a hat after no real exertion in both legs and arms, but I am hypermobile. I’ve partially dislocated my hip and shoulder a few times. Fibro wouldn’t cause ON or l’hermette’s sign, would it?? And I’ve also got a patch of skin on my left foot that has been numb for ages. I can’t really remember when it went numb. Then there CFS. All this started when I got glandular fever in 2006/7 and I’ve ever bee right since. I’m only 30 for goodness sake and I feel like an 80 yo
I am not sure what to think. I have been clinically diagnosed with fibromyalgia and yet some of the symptoms that I have don’t fit they are more ms like but without any evidence of lesions on the mri it won’t be diagnosed. From my own experience of fibromyagia, it can be horrendous, so if you do have it don’t underestimate it, for me it is disabilitating and the pain undescribable at times. Personally, I think that there is an over lap and I have read that you can have both at the same time. I have not signed up to a fibromyalgia forum maybe I will in the future but for now I am going on my doctors instinct that there is more going on. Is glandualr fever an indicator, there has been some research to suggest so but nothing solidly proven. I too have had glandualr fever, and am b12 deficient, ms or fibro I’m on the fence. Hope you get sorted. The key is that you get the right treatment then hopefully you can start to cope better with your symptoms. Lou x
Thanks for your reply!! Discovered I’ve got low b12 4 weeks ago as well so hopefully the neurological symptoms is just that, which can hopefully be controlled. I am tired. I’m always tired and I have been for a long time. I’m not just tired, but my body is tired. My muscles are tired. My muscles and tendons ache most of the time (in different places) and I’ve just become used to it. I don’t get to the doctor much because 9 times out of 10 I don’t make it because it’s just too much effort. That sounds lazy, but it’s exhausting doing anything, even drying my hair after a shower. When I read my notes in hospital, one doctor queried fibromyalgia and I thought no way as I know someone with it that is in a lot of pain and I don’t see myself as in a lot of pain. But sometimes I am. I sometimes have to get help to get out of bed because my back and shoulder spasm and I can’t move. Isn’t it funny how you just forget stuff like that, even though it happens a lot. My memory is terrible and that gets me down a lot. I feel stupid because I forget words all the time. The most basic words. Wish I could go to sleep until this was all over and had answers. Oh, and a cure