help me

New diagnosis and before diagnosis
1

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

2

Good grief! Talk about trying to get blood out of a stone with your neuro! What on earth is he dismissing abnormal evoked potentials as being down to a faulty brand new machine for when you also have lesions on your MRI and your eye symptoms are usually down to demylination and your brother has MS etc etc.

I’m fuming for you! Are you on any medication for your symptoms? You need to demand some, there’s no need to suffer so much. I’m so sorry you’ve been in this awful situation for so long: it’s just unnecessary.

Dxx

3

I’m speechless and that doesn’t happen often. As deb say definitely demand answers, what a ridiculous situation!!

4

Thanks for your replies…while living with the m.e diagnosis I’ve tried lots of medications but to no avail I’m really sensitive to most of them having worse side effects than the symptoms. I’ve asked my GPS to write a letter to ask for a new mriscanto. See if more lesions are present from the last one. If I don’t get anywhere I’m asking for a referral to so.done else I think Xx