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Just looking for thoughts

I’m just looking for some advice really to be honest, I started having problems 11 years ago with pain on one side of my face, slurred speech and paralysis in my mouth. I was under neuro but they were unable to identify what the problem was. Two years later I experienced sudden onset blurred vision, they tested me for m.s. But ruled out based on MRI and lumbar puncture.

I was subsequently diagnosed with m.e. , whilst I have had multiple neuro symptoms since, they never lasted for more than a few days. Two weeks ago I noticed my speech, legs and cognitive function were all deteriorating. Being stubborn I brushed it off as a few bad days, but then I developed a severe pain at the base of my skull extending all the way through to my forehead and my speech deteriorated to the point I was constantly slurring.

Ive got the pain under control now to where it is a dull ache and my speech has started improving but I’ve developed constant numbness in two of my fingers and forearm on my left arm over the last two days

They ruled out stroke, tia and bleed on the brain by ct and sent me for an MRI. The MRI has now come back okay but my gp is referring me back to neuro as she feels I need to be retested by lumbar puncture.

Is it even possible that if I was tested 8 years ago (and was cleared) that I could now have m.s. … would it have not come up on the previous test

That’s a really interesting question and I’d be interested to hear others thoughts. My results have all been clear but I remain convinced as does my GP that I have MS. Another thing I’ve learnt on this crap journey is that in most cases where an identifiable cause can’t be found, ie, fibromyalgia or lupus or whatever else, then MS is always on the table, regardless of test results. My neuro told me if it quakes like a duck, looks like a duck, then it usually is, but can’t be diagnosed until the tests show what they already know. Unlike other conditions such as cancer, it’s not a case if you have or haven’t got it. MS is not as clear cut as that. For those with symptoms but no cause identified, you spend your life in limbo because MS can NEVER be truly ruled out. However, you have been diagnosed with ME which shares many similar symptoms with MS and they wouldn’t have diagnosed that without believing that’s what you have so it could be an ME flare up…

I disagree that you can have all the relevant tests (MRI, LP, VEP, etc), have them all come back clear or negative and then still have MS. I assume this is all following physical neurological examination, which again would pick up indications as to whether MS is just not showing up on the tests, but clearly demonstrated in physical exam.

MS can be diagnosed with few positive clinical tests, but you’d expect something to show up.

It appears that you could have a negative LP then years later have another LP that is positive for O bands in the CSF. My understanding is that relapses or other MS activity will leave residual evidence in the CSF, ie positive LP. In most cases. But that you’d also have to have lesions on MRI for MS to be diagnosed.

The test generally used is the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria To be diagnosed, you need to demonstrate evidence of MS activity that is disseminated in space and time (DIS and DIT). An MRI could show dissemination in space (more than one lesion) and time (different ages of the lesions). An LP may show dissemination in time, but cannot show DIS.

If you had both clear MRI and LP 8 years ago followed by a clear MRI now, it’s not very likely that you’d have MS diagnosed by LP alone, because you wouldn’t have DIS. The neurologist generally knows what tests are called for based on your physical exam added to the previous tests and current MRI.

I do understand what the other poster said about MS never being ruled out. It’s possible to have a negative LP and be diagnosed with MS, but you still have to have clinical evidence to be diagnosed. And that is usually MRI showing demyelinating lesions showing dissemination in space and time.

Sue