naim 17/04/15
Last reply 3 years ago
Just told I have had ADEM all this time

Hi I recently had to go and do another Lumbar punch by a different neurologist
and he said to me that i dont have MS because all my cells are negative
and 98 percent of MS people have positive cells .
But I have also been on rebif for about 16 months.
Can the cells change if i was originally diagnoised with MS?
An if i have had new lesions on my brain every 6 months i did MRIs and my cells were negative and not positive
does it mean its still ADEM and not MS?

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stumbler
3 years ago

@naim, ADEM is a new one on me, but this page should fill in some of the gaps. And it may raise certain questions that you will want answered.

http://www.nationalmssociety.org/What-is-MS/Related-Conditions/Acute-Disseminated-Encephalomyelitis-%28ADEM%29


naim
3 years ago

@stumbler thank you so much that does help a lot to explain things. But I’m still not sure of if it’s MS or Adem. And if I stop the injections and it turns out to be MS will be hard for the medical aide to approve again.
My neuro said that I must stay on injections till August and then we do an MRI and make a call then as to what I should do.


stumbler
3 years ago

@naim , I think you’re not the only one whose not sure about MS or ADEM.

It seems options are being maintained for you so that the situation can be reviewed again. This seems a reasonable way forward.


naim
3 years ago

@stumbler yeah I guess il continue and wait till my MRI in August.
Thanks for assisting me.


stumbler
3 years ago

@naim , we’d all like our medical specialists to be magicians, but unfortunately they’re just human. Their wait and see approach is understandable, but at least they’re looking at all possibilities for you. 😉


naim
3 years ago

Amen Brother @stumbler


Anonymous
3 years ago

Most people have positive lumber punctures with MS but its not unheard of not to. People with MS that test negative are thought to have a milder disease course. Its sounds like the right plan to continue as you are until your next MRI although August is some time away given you’ve been on the drug for 16 months. If it turns out to not be MS I’d be furious but best outcome overall.


naim
3 years ago

@sandwich yeah it is a bit strange i found that I must wait till August to do the MRI.

Im just not sure what it would mean if I have new lesions yet my lumbar punch is negative :/

lol they should make a flow chart to come to a conclusion

oh well it is still positive news and a step in the right direction 🙂 #grateful #2015 #positivity

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