Diagnosed with CIS

New diagnosis and before diagnosis
1

Hi There

I am new to this forum so please bear with me as all this is new to me and i am not totally up to date with all the terminology.

I was diagnosed with CIS late September after being referred to a neurologist with numbness in my right hand and a numbness in my chest. I thought this was a trapped nerve as i had fallen on my right side. Whilst the numbness in my hand remains (prob is nerve damage) the numbness in my chest has gone.

I got an MRI in August and they said i have inflammation of the spinal chord and a couple of lesions. the report was full of medical jargon such as demyelinating changes in periventricular, subcritical, cervical cord and right middle cerebellar peduncle distribution. See what I mean! lol

The neurologist suggested another MRI with the contrast, which has been done and all is fine, same as above. Also, had a VER test, which came back with a slight slowing in the right eye, which he doesn’t seem to alarmed about. Now awaiting a referral to the neuro inflammation team. He did bring up about a LP but i though best to postpone that until necessary. There was also a mention of steriods but he said that he would leave that up to the inflammation team.

Has anyone experience of the neuro inflammation team? Any idea of what i can expect?

I am bit in limbo just now until i see them and see what the planned course of action will be (if any). I had absolutely no knowledge of the above and any experience.

Any help/comments would be great.

thanks

Mandymoo x

2

hi mandymoo

i can only talk about my own experiences but here goes.

i was diagnosed during a massive relapse.

i was lucky because i didn’t have to wait around for another relapse as i think i had old lesions.

i was given a 3 day course of intra venous steroids which really made me feel a lot stronger.

i had a lumbar puncture which although wasn’t my idea of fun also helped towards my diagnosis.

don’t worry about the different teams you will see.

they all have the same aim.

take a hold of your stress and chuck it in the bin.

it does you no good at all and just makes everything worse.

carole x