Hi all. I’m new here and pulling my hair out. I started developing odd Neurological symptoms 4 years. I was under Neurology for the treatment of Chronic Migraine. They did a brain MRI and found a right sided white matter lesion in the semiovale region. Tests for Autoimmune disorder were performed and came back normal so it was decided the lesion was incidental. 2 years later I developed chronic fatigue, balance and co-ordination problems, muscle pain and weakness and eye pain. The Neurologist put it all down to migraine. I then lost my sight in my right eye and was sent to the eye hospital where they diagnosed Optic Neuritis and suspected it had been recurrent but not diagnosed. I asked for a second opinion and had a LP, bloods, MRI, and Evoked eye potential tests. I saw the Neurologist on Monday. They discovered that their was complete demylination of the Optic Nerve in my right eye and my brain is not processing information quickly enough or storing it. The bloods showed inflammatory factors and the MRI showed a new lesion. LP was normal. She said she wouldn’t give me a MS diagnosis at the moment because it’s not active and the lesions are not angry or aggressive. I’ve now been referred to a Rheumatologist. I’m so frustrated and upset because I feel incredibly unwell and I don’t know what the demylination even means for my eye. All I got from her was that it wasn’t looking good. Any advice would be greatly appreciated. I really don’t know where to go from here.
Hello Becca
It sounds like you’ve had one of those appointments where you expect to hear one thing, hear a load of other stuff and ultimately fail to ask the appropriate questions because you weren’t anticipating what you heard. (Oh for a time machine!)
Perhaps you could write to her and ask those questions. I would think you need to know why she wouldn’t diagnose MS, after 2 lesions disseminated by time and place, plus optic neuritis which seems to have happened more than once. A positive LP isn’t required for an MS diagnosis. The symptoms you’ve listed above don’t seem to be ‘not active’. But you could ask her what she means. Also, demyelination of the optic nerve. What does this mean? What is likely to happen in the future (if that’s a question that can be answered).
I’m not at all surprised that you feel so let down and left alone to get on with it. An alternative would be to try to get another appointment, maybe your GP can help?
The trouble is that all we can do is sympathise with you. I do hope you get some proper answers, get some clarification of what it all means for you.
Sue