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Another Update all advice welcome

Good afternoon everyone,

I hope everyone is having a good day.

My neuro called me today to discus the message I left for her last week when she was on holiday, (she is very good).

She told me that my severe twitching/legs kicking out could be an old symtom that has materialised greater and dosent believe it to be anything new. I explained how it is all day but today is a good day for me, if I wake up and its bad then I can expect 3-4 days of it before I improve and then it starts again. She said if it gets worse then she can put me on steroids, but I am on the cuff for this treatment.

I have my VER EER and my EEG on the 5th and 9th with my follow up with her on the 27th. She has said that I may need another LP just to confirm its not infection and it is imflamtion as I did have 5 white cells.

The thing is, is that I have looked up inflamtion on the spinal cord and a brain lesion, she keeps reffering to it as inflamation but could this still be MS, I know this can be a cause amongst others or is she still not wanting to say to much until she recieves the other results? she said she doubts they will find anything on my EEG but the VER is to look at my nerves in greater detail which she expects will help.

Anyone elses thoughts would be much appreiated as I am so confused as to what is actually going on now. I am prepaired for MS even my wife believes it to be MS as she had a friend with it and see so much simular stuff between us, but she still has not mentioned MS to me. (sorry for the long post)

‘Sit quietly and let the thing go on,’ is one of the best pieces of advice I ever got, when I was trying to get ahead of myself over something. It wasn’t in the context of neurological limboland, as it happens, but it surely applies there, and with bells on.

When we are short of information, the most natural thing in the world is to try to spin a coherent story out of the scraps we do have, or what Google says, or what our spouse’s friend has, or whatever, all mixed in with a witch’s brew of what the neuro might have actually meant, or been seeking to not say, with this or that throwaway, or guarded, comment before the results are in. Look, we’ve all done it, churning it all round, over and over, hoping and fearing and guessing. But it’s just totally the road to no town, really it is.

Please do try to put all this stuff on the back burner until there is something you can actually do about it, i.e. when you are in the neurologist’s consulting room, hearing what she has to say.

Deep breaths. There isn’t anything you can do at the moment, so please try to stop trying!

Alison

x

As far as I understand it, MS is inflammation of the central nervous system (CNS) in two or more different parts of the CNS and at two or more times (attacks, episodes, remissions). My Optic Neuritis attack (my first attack [CIS]) was described to me initially as “inflamation of the optic nerve” (to explain what Optic Neuritis is, I guess). I think for it to be counted as two attacks there has to be 30 days between episodes. So even if it is diagnosed as an MS type inflamation attack, it could be a CIS. With a 50% chance of not ever happening again. The blood and CSF tests will be to find any other explanation.

Good luck.