Hi this is what was said…unexplained the epa had confirmed changes consistent of optic neuritis of the left eye and the mri scan of the brain previously had shown appearances that would suggest desalination. The question therefore is whether she has got clinically isolated syndrome and that her symptoms have another explanation or whether she has multiple sclerosis. The normal lumbar puncture was against diagnosis of m.s but approx 5º/º of patients with a diagnosis of ms do have normal lumbar punctures.these patients however are atypical. I don’t expect there will be a way of clarifying this and think twill be a question of giving symptomatic treatment and keeping an eye on her in clinic. She asked about repeat imaging which I think would be sensible and will arrange this. She is not willing to have a repeat lumbar punctures and.I understand this. I have sent of bloods for mitochondrial DNA testing levers and aquamarine antibodies.will see her once I get these results. I don’t know how to feel?? I’ve been ill for 8 years now with no remittance in the last year from tingling…pain…pins and needles…numbness on one side of my face although it huits to touch it chronic constipation urgency to urinate aNd six
Hi Joanne - yes agree difficult to understand cant help you there. I picked up on your: Chronic constipation - my worst problem at the moment. Are you prescribed anything for this? I have been prescribed various laxatives. Bladder - this was my first awful problem. Ask for a referral to a continence clinic or phone your local hospital ask to be put through to the continence clinic and ask if you can self refer to speed the process up. You really need to find out what’s going on and what treatment is available - I was put on tablets to help. It is embarrassing to go to this type of clinic but my continence nurses were absolutely lovely and its not something that they haven’t heard before. Let us know how you get on Supportive hugs Min xx
Hi Joanne,
Are you typing this on a tablet or phone that auto-corrects, by any chance? Some of the words seem unlikely, in the context of a neuro letter. Desalination? Demyelination, surely? And aquamarine antibodies? Never heard of these! I think your device is changing some of the words to things that aren’t right, and that makes it rather hard to understand what your neuro is saying.
Clinically isolated syndrome is effectively a single attack of multiple sclerosis, but some people never have another one, which means it never satisfies the definition of the “multiple” part. Multiple must be more than a one-off. So that’s why he’s saying you can’t have a confirmed diagnosis of MS at this point, and he can only offer “wait-and-see”.
This situation is not unusual.
Further MRI scans - usually at least a few months after the originals - sometimes show new activity, and in this case a possible/probable diagnosis can often be converted to “confirmed”.
He’s still looking for other explanations, though, which is why he ordered the blood-tests (MS doesn’t show in the blood, but a lot of other conditions do).
All I can say is you seem to be being looked after appropriately, and he’s being thorough in his investigations. Lack of a firm diagnosis doesn’t mean it’s not real, or is psychiatric in origin. I understand your frustration in not having definite answers yet, but usually, time will tell.
A hasty diagnosis could be a wrong one, so at least he’s being cautious, and waiting for all the evidence.
Tina