Evening everyone,
I received my letter from the new neurologist yesterday. He has diagnosed me with FND (functional neurological illness) however he’s stating that although MS Is present in the CSF because I don’t have lesions on the brain he won’t do anything about it. He has suggested that I’ve an increased risk of developing ms in the future. I’m feeling a bit confused once again by all of this.
Has anyone ever been told they have FND but also MS is present? I’m feeling like I’m being fobbed off as there’s no lesions present he’s not willing to do anything.
Thanks
danielle xx
Dear Danielle
I suspect (yet again) that your neurologist is a difficult person to like.
He seems to have confused and muddled his way through the diagnostic process with you - and perhaps does with all his patients, at least the non straightforward ones. And let’s face it, everyone is different, so no one is straightforward. And he does seem to have the personal skills of a non very friendly scorpion.
This is how I am reading his diagnosis / non diagnosis. You have Oligoclonal bands present in the cerebrospinal fluid. Now something like 80 to 95% of people with MS are positive for O bands. I don’t know whether you can have O bands in the CSF, but no lesions and so not have MS. Equally, your neurologist seems to be saying that because you have O bands but no lesions, you both do and don’t have MS. Very confusing.
The Oligoclonal bands show up the presence of inflammatory activity in the CSF. Normally, in MS, this results in lesions either in the brain or on the spine. Or both. (I’ve assumed he’s done an MRI of your spine as well as your head? If not, you should ask him to refer you for one.) So ordinarily, people with O bands would also have lesions and therefore be diagnosed with MS.
So that would seem to say, yes there is inflammation, but it’s not actually translated into lesions or definitive injury to the brain or spine. The McDonald Criteria McDonald criteria | MS Trust says that without lesions, you can’t be diagnosed with MS. Which is why you’ve not been diagnosed.
So all he can do is to diagnose FND, because clearly there is something wrong, something real, but he is just not able to diagnose MS. Which means he is not able to prescribe a disease modifying drug.
Does this make sense to you? And does it help or just confuse things even more?
Sue
Hi sue as usual you’ve been my life line. I understand fully what your saying. I think that’s exactly what he’s saying that because no lesions are present I don’t have ms, but I’m at high risk of developing ms in the future. So he will do a further mri next year. I’m so thankful that you help me to understand all of this confusion. I’ve read the same information as you that 80-85% of people with O bands do have ms. I think he’s just a massive chip on his shoulder for having to pick up the previous consultant work load and really pi**ed off at having to do the extra work.
Again I agree he’s not very friendly to the point where I really don’t want to go back to see him due to him telling me I’m mentally unstable. That whole consultation has put me in a downward spiral and posted havoc with my stress levels and mental health. I’ll see my gp after Easter and see where it goes. I’m also really concerned that he wants to take me off ALL my seizure medication and I think that’s really reckless. Just more unnecessary stress.
Thanks again sue xx