My neurologist has finally got together with his neuroradiologist colleague and looked at my MRI images. I was initially seeing him privately but have now been referred to see him through the NHS.
Life is very difficult at the moment and I’ve not been able to go to see the neuro but he’s put his findings in writing to me under the circumstances.
They’ve decided that there is a lesion on my left optic nerve (still blurry), one at C5 and another at C6/7. He tells me that these are consistent with demyelination. He goes on to say that he’s received most of my blood test results and all is clear there, but the lupus anticoagulant test needs to be repeated as the sample was spoilt.
He said that my ‘tests and imaging so far are thus consistent with an inflammatory condition which could be Multiple Sclerosis’. Any thoughts on what else it could be?
My family had some terrible news a few weeks ago and stress levels are running extremely high. For about five days I had a fair bit of pain in my neck which would then radiate up the back and side of my head - could the lesions cause that?
I would guess my NHS appointment will probably happen in about eight to ten weeks. I think I may as well wait for that rather than keep paying privately. I couldn’t pay for any further tests etc. anyway.
I can’t really talk at home about this at the moment so would be so grateful for a chat here.
I am sorry that you have so much on your plate just now and that things are so tough.
It must be so difficult for you to deal with the worries about your health without wanting to burden your family further - making your own burden even heavier. It can be a lonely business at the best of times, and clearly this isn’t one of those. Hang on in there - you will find your way through. I just wish that life was a little easier.
I’m trying to be positive … I got to the grand old age of 38 with nothing much to complain about, but the last couple of years would test anyone I think x
it sounds like the neurologist is hedging his bets slightly. Unsurprising really, you don’t expect to have an MRI and be told in a letter that it’s definitely MS. It’s more likely that the neuro would say roughly what he has, then refer you to a few more tests. Most likely an LP (lumbar puncture) and maybe a VEP (visual evoked potential). Obviously the NHS doctor will need to repeat the lupus blood test, and in all likelihood will repeat some of the others too (belt and braces).
So, when you see the NHS neurologist, will s/he have seen the MRI scan done by the private neuro? Did they give you disc with the results on it? If not, write to the private chap and ask that he a) share the results with the NHS neuro - assuming you know who you’ve been referred to, and b) for a CD copy of the MRI.
I can’t imagine what else could cause demyelination. But then, like most of us on here, I’m not a doctor. I just know that when I was first tested for MS, the MRI showed ‘evidence of demyelination’ (I also had an LP showing oligoclonal bands so in my case it was fairly unequivocal that at the very least would today be labelled as CIS). However, the neurologist did nit at that point diagnose MS. It’s just that if you’ve had clinically significant relapses as well as the lesions, it could be MS.
But I think you already know this.
I am sorry you’ve had such a load of bad times all piled up with your heath being an extra stressor. And of course, chat on here, you know we’re always ready to lend a metaphorical ear.
The private neuro and the NHS neuro are one and the same and the blood work has all been NHS so far so hopefully won’t need to repeat anything or have too much confusion changing over from private to NHS. He already has the CD of my MRI images and all my notes. I’m going to call the hospital when I finish work and try and find out roughly how much longer it will be before I see him on the NHS.
As you say I think I do know, and I have for a while. Everything points at it, except maybe for the fact that the lesions are only on my optic nerve and C-Spine (which makes me worry about Devics but I don’t know a huge amount about that).
Thanks again, this forum has helped so much over the last four months or so. It always amazes me how kind people can be to people they’ve never met
Neither do I, but I was tested for Devic’s at one stage. I dimly recall looking it up and finding that I didn’t fancy it much either, but that was OK because it was just old fashioned MS in my case. The Devic’s test if a simple (from the patient’s point of view) blood test, I think, that has to be sent to a particular place - Oxford? - and then you know. If your neuro thinks it might be a possibility in your case, he/she might want to exclude it from the suspect list. I have no more idea than you what else (if anything) might be on that list with MS.
