confused

New diagnosis and before diagnosis
1

hi guys hope you are all wel but.

im a bit confused because i saw the ms specialst before christmas

he was awesome in his approach to all this such a nice guy !!!
he said everything else has been ruled out and the only thing left on the table is PPMS
we had a long chat about my history and ongoing symtoms after he gave me another neuro exam .

he said he could see things have changed in my exam with hyper reflexs and increased muscle tone but because my scans were not giving him enough info just to be 100% sure he wants me to have a samatosensory evoked potential test to confirm my cns has been compromised in two places as my vep was abnormal. and he knows my spine has been hit cos of the non compressive myelopathy that he says i have

if it proves what he beilieves is happening to the nerve signals he will cal the dx officially in a couple of months.
so now i got this report of my recent ssep test and it says its normal ??and i wonder if its all in the air again and will he brush me off
regards mick

2

SSEPs really aren’t all that good as many MSers have normal results. I don’t know what the neuro will think though. Hyper reflexes and increased muscle tone are signs of an upper motor neuron problem. Abnormal VEPs are completely separate to this. Therefore, to my completely unqualified mind, there is already evidence of damage to two parts of the CNS. Have you had an LP? (Sorry, can’t remember.) Karen x

3

hi karen

yes i have had a faild LP as they could not get the needle in as my back muscles are like stone (spasticity im told )

and was in bed for three days with pain and spasms .

i do have a non compressive myelopathy thats already been dx

he did say he would have to do another LPand use medazalam to relax my back muscles if thi ssep did not show anything. but i realy dont want one as i suffer enough

and yes i think my cns has been hit twice

regards mick