I used to hang about in new diagnosis a fair bit earlier this year, as suspected ON in Dec 13 led me to the neuro and further investigation of my left sided muscle symptoms which had previously been dismissed when it first appeared in 2011 .
So to summarise suspected ON in Dec 13, Jan 2014 I had L’Hermittes and the appearance of obvious dorsiflexor weakness. In May I had a brain spine MRI with contrast, when they found several areas of T2 hyperintensity at c5/c6, lower area of spine was too poor to interpret due to my movement (I was only breathing!), clear brain and no contrast enhancement.
I went on to have 2 x VEP, SSEP and the audio one, all neg. Then followed by neg Lumbar puncture and neg NMO antibodies.
I was told at the last neuro appointment (before my LP) that if the LP was clear and so were the blood tests it would be assumed that the Sjogren’s Syndrome I already have is the cause of the transverse myelitis , and I would be referred back to rheumatology for further treatment.
I knew that my bloods and LP were negative thanks to my GP, so when I went to my neuro appointment yesterday I thought I knew what he would say. However, he completely changed his mind and has now said he wants a re-scan with contrast, and he wanted to refer my case over to the MS team. I was a bit shocked, and I was on my own so I didn’t ask enough really.
Having got home and thought about it, I have realised that the only thing in my opinion which has caused the change of heart is that I told him it seemed to me my leftside weakness and dorsiflexion was worse, and he then examined me and then we sat back down and then he said this change of heart.
I racked my brains and now it has just dawned on me that maybe he is thinking its possibly PPMS? Not really sure what I am asking, but wondered if any of you coould shed some light for me? Thanks