help me

hi everyone, im new here.

ive been ill for 8 year sdiagnosed with m.e, my brother the same and he was recently diagnosed with progressive m.s…i am in limbo land and need some advice

i had an mri scan last year which showed multiple lesions and the radiographers note said they were non specific but dyemylination shoud be considered high on the diagnosis.

i was sent for a l.p which came back negative. i had evoked potential analysis which came back with abnormalities but my neurologist said he thought the machine was new so could be a faulty reading

i then partially lost vision in my left eye so was sent to another lab to have another epa which came back showing abnormailitues in my left eye and neuro said the most common cause is dymelination.

they asked for access to my bros notes to see how it was diagnosed (which he refused) so im now waiting to see my neurologist at the end of this month. my symptoms are getting worse im in pain always my skin is sore to touch symptoms get worse with heat pins and needles tingling fatigue memory loss mood swings motion sickness to name a few

i guess i just want to ask for peoples experiences if they have any similarties or anything which could help

many thanks x

Hello, and welcome :slight_smile: You don’t say whether or not you’ve had your spine scanned? If you had lesions in your brain and spine as well as positive EPs, then the negative LP shouldn’t have much influence (about 10% if MSers have it), but there are possibilities other than MS. I don’t get the neuro’s “it’s new” reasoning - if he was unsure, then he should have had the test repeated surely? The fact your brother has been diagnosed slightly increases your chances of having MS, but probably less than most would think. What it also does is increase the chance of it not being MS, but instead a genetic condition. I guess that’s why the neuro wants to see his notes - to see how robust his PPMS diagnosis is. Hopefully the neuro will have some answers for you at the end of the month, but whatever happens, make sure to ask for help with your symptoms: there are some very effective meds available these days so don’t suffer in silence. Karen x