Just diagnosed confused.

I recently got diagnosed with MS but my Neurologist isn’t really answering my questions, quick review, in January my right side from head to toe went numb and I have trouble with light touch in my hand, GP thought it was a virus but I knew something was wrong as it gradually got stronger and I slept for bout 10 days completely energy less.

MRI on brain in March which the GP then said you have MS, specialist appointment month later 99percent MS will confirm after spine MRI, then new symptoms begin, right leg went ice cold up through testicles, waist and back, left leg stopped working. Results last week show I have Brown Sequard on my spine which after reading about is spot on! Then least week major disorientation resulting in nausia. Should say cold leg is back to somewhere near normal now, left leg better but weak.

I have been told I don’t need meds unless I have multiple episodes in a 2 year period, my symptoms have come at different points over last five months, so are they saying this is one episode? Does anyone else have Brown Sequard will it come and go symptom wise ?

I’m 30 and totally have my head around my illness but I’m frustrated that they can’t explain in more detail. Any advice would be appreciated.

Thanks Tom

hi tom

sorry to hear that your neuro left you feeling frustrated.

i was lucky to have a fab neuro, very efficient - didnt hold back.

i was of the understanding that the protocol was to diagnose sooner rather than later and get onto a DMD.

maybe the younger, more forward thinking generation of neurologists will be already putting this into practice.

ask your gp, say that you feel that your neuro didnt explain it well at all and ask to be referred back.

research that protocol i mentioned. i’m 99% sure it’s right but i have a black hole in my brain!

good luck

carole x

Hi Carole

Thanks for responding as i’m new to all this :smiley:

What’s confused me is i know a few people my age who have MS and they are all on Meds, plus the booklets they

gave me says it’s best to start meds as soon as possible, the books they gave me! Yet they are saying if i only have episodes every 3 or 4 years i don’t need any. And if i feel uncomftable in my legs etc i can go in for high dose steroids. Not sure this is the answere? i have requested a second opinion now from Best Doctors so see what they say.

Thanks Carole


hi tom

good idea to get a second opinion.

the idea behind DMDs is to reduce the rate of relapses.

as there is always some residual effect the DMD will cut the rate of disability.

that neuro team need shaking up, how irresponsible!

carole x