Piecing it together....slowly


I just needed somewhere to share my experience and I guess fear.

On Saturday the 27th of April this year I completed a 10k mud run and felt amazing. By the Wednesday I was in hospital on a stroke ward waiting for an MRI with left sided numbness and partial loss of sight in my left eye. My gait was unsteady and I was walking with the aid of a stick. The MRI showed the I had a lesion between my frontal and parietal lobe which the doctors told me could be a tumour, an infection or MS but they ruled out stroke. I had endless blood tests, an MRI on my spine and a chest x-ray all of which have come back clear. I also had a lumbar puncture and the initial results also came back clear. I was discharged 10 days later by which time I improved enough to lose the stick and my vision had returned.

I saw a neuro consultant two months later. He told me it could be an infection such as lyme’s disease or MS. He then referred me to a neuro surgeon (which I wasn’t expecting) to look at my cystic lesion (again cystic lesion hadn’t been mentioned to me). I saw the neuro surgeon on the 6th of August and he told me that one of the bands in my lumbar puncture had shown a result on pattern 2. My GP has since told me that this is not an indicator for MS. He also sent me for another MRI which I had on the 10th of August. Yesterday, after much chasing, I spoke to the original neuro consultant. He told me that my latest MRI shows that the original lesion has shrunk but they have identified “a few others”.

I seem to be getting all sorts of information drip fed to me. Some of the results seem to move away from an ms diagnosis and this latest one towards MS. I’m seeing the consultant on Wednesday next week and just wanted to see if anybody had a similar experience or could even suggest questions I may want to ask.

I’ve not had any further relapses and was discharged from the eye clinic a month ago with a clean bill of health.

Thanks for reading.

Have you had full blood tests? To check for lyme etc. I had to request blood tests then the neuro was happy to let me have them done after that appointment. It came up nothing other than low vit D and slight low calcium. I am diagnosed with MS now.