I wonder if someone could give me some advice. After seeing my neurologist last week she advised that my MRI has 8 lesions, she would now like to do a lumbar puncture and visual potential test. I have ongoing symptoms of burning pins and needles on my legs, arms , face and shoulder. Dizzy and off balance and cognitively forgetful with a brain fog. This has been since Oct 16. My question is this, can my neurologist not confirm ms from the number of lesions and if it is not ms and all blood tests rule out everything else and with those symptoms, what else could it be??
Thanks for reading. So worried and anxious.
It is not the number of lesions but time and space of attacks.
Immediate diagnosis of MS if you have had: 2 attacks and there is objective clinical evidence of at least 2 lesions OR objective clinical evidence of 1 lesion with reasonable historical evidence of a prior attack. (MRI, LP, VEPs etc are still not required, as is the previous version, but most neuros will do it anyway I would guess. “Reasonable” means that they may accept patient’s own report of previous attacks.)
When someone satisfies dissemination in time, but not space, i.e. if you have had at least 2 attacks and there is objective clinical evidence of 1 lesion. Diagnosis of MS when dissemination in space is demonstrated by: more than 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord) OR a further clinical attack implicating a different CNS site.
When someone satisfies dissemination in space, but not time: i.e. if you have had at least 1 attack and there is objective clinical evidence of at least 2 lesions. Diagnosis of MS when dissemination in time is demonstrated by: Simultaneous presence of asymptomatic gadolinium-enhancing and non-enhancing lesions at any time; or a new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or a second clinical attack.
When someone satisfies neither dissemination in time nor space, i.e. if you have had 1 attack and there is objective clinical evidence of 1 lesion. Diagnosis of clinically isolated syndrome (CIS). Diagnosis of MS when dissemination in space and time is demonstrated by:
- At least 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord) or a second clinical attack a implicating a different CNS site; AND
- Simultaneous presence of asymptomatic gadolinium-enhancing and non-enhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or a second clinical attack.
Diagnosis of PPMS when there is 1 year of disease progression (retrospectively or prospectively determined) plus 2 of 3 of the following criteria:
- Evidence for dissemination in space in the brain based on at least 1 T2 lesions in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions.
- Evidence for dissemination in space in the spinal cord based on at least 2 T2 lesions in the cord.
- Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index) [i.e. positive LP].
You can google Polman et al. “Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria”. ANN NEUROL 2011;69:292–302.
Probable gobblegook to the uninitiated but for some reason best known to your Neurologist. This will give you a better understanding of diagnosis, Diagnosing Multiple Sclerosis
TBH, I do not know whether 8 is a large number or a small one in this context and neither do you, I expect. A long time ago, I did ask the question of how many lesions were visible on my latest MRI (I had had MS for a while, even then) and I got a very cagey response along the lines of ‘about as many as we would expect to see, given your clinical history’. I took the hint and probed no further.
I think that probing no further and not trying to see around corners is also the best thing you can do for now. The process of finding out what is the matter is in motion - that’s the important thing. Trying to predict the outcome when there are results yet to come in is only a recipe for sleepless nights, and it gets a person no further forward. At least, that’s what sad experience teaches me.
Good luck with it all.
Thanks for that massive amount of information George, I have read it through 4 times now and think I understand it a bit better. You are very knowledgeable, so much appreciated. Will take your advice Alison, even though living like this is making me anxious anyway. Balance being a horrible issue reminds me constantly. Alison was it many years before you were diagnosed too then? Really appreciate your thoughts and advice.
Thanks for replying.
No, not at all. I was dx only a few months after first going to the GP - my MS was not hard to spot. The incident I described was 10 years down the line when my MS had got very active again and I needed a drugs upgrade to quieten it down a bit.
I’ve never been told exactly how many lesions I’ve got, their locations or anything about them. To a layperson, it’s a bit of an irrelevance. I was shown a picture once, and the neuro pointed out a couple of white spots. That’s all I needed to know.
I’m sure it’s a good thing to be having an LP and a VEP. This way, you should find out fairly definitely whether it is or isn’t MS. But just be aware that some people have lesions on their brain and the LP and VEP don’t support an MS diagnosis.
So, don’t accept that you have MS until it’s actually diagnosed. Obviously, you’ll spend time looking at information on the internet, just don’t trust too much in the power of Dr Google he’s not a very good neurologist.
Thanks for that Sue,
My other question was… what can cause lesions if not MS??
Thanks again, sorry for so many questions. I am trying to get my head around it all.