I don't know my own body anymore

Hi there

ive been trying to digest the information given to me by the neurologist tasked with taking over my case after my previous neurologist left.

The scans taken four months after I almost died from an encephalopathic syndrome show that at some point between late 2007 and summer 2014 I’ve developed four persistent ovoid periventricular lesions of a size and distribution that match demyelination…and I have neuro symptoms that match MS, but I have other Neuro symptoms that are different— these could come from either the damage to my spinal cord caused by an exploded L5-S1 disc and the 3 surgeries it took failing to repair the damage between 15 and 12 years ago, or from the Posterior Reversible Encephalopathic Syndrome but my neurologist

My neurologist says that I have to have nine such lesions so I’ve to see her again in April with a repeat MRI in October because she doesn’t want to perform the LP.

i feel like I’m wrong to want to know what these things in my head are before another year passes…


i understand the longing to know what’s wrong.

has your neuro given any advice as to what you should do for the next 11 months?

are there any groups for strange neuro conditions in your area?

we have one such group in bolton and we can access hydrotherapy and exercise sessions through them.

it doesnt seem reasonable for your neuro to leave you with such a huge question,

carole x