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Eastendgirl

Clinically stable but feeling rubbish

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Stressed
Eastendgirl

My RRMS is ‘clinically stable’ apparently – why do I feel so bloody crap then…!? 

No new symptoms, just the old ones making me feel rubbish. But seemingly that’s ok because there’s nothing they can do about them now as the damage is already done. 

Wasn’t told how important it was to go on DMD’s when I first had symptoms, Neurologist now says I’m not eligible until I have 2 new relapses within 2 years – but what about damage being done behind the scenes so to speak?

 

 

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Procrastinating
Stumbler

@Eastendgirl , here's a video from Aaron Boster, an eminent Neurologist from the States which might answer some of your questions :-

 

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Stressed
Eastendgirl

Thanks @stumbler for the link to the video.  It only talks of the importance of going on DMDs as soon as possible but doesn’t say what should happen if you are well past that point.

 

Neuro now seems to take the view that the risks of taking DMDs now outweigh the benefits they might bring. If only I’d been properly advised and made aware of all the facts when I was first diagnosed. Now it seems I have to wait until further relapses before DMDs will be considered, so any hidden damage will not be addressed.

 

I suppose they know what they’re doing…but I wouldn’t put money on it.


Edited by Marina
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Procrastinating
Stumbler

@Eastendgirl , to an extent, your Neuro is right. DMDs are an insurance for the future. Their job is to reduce the frequency and severity of future relapses, so they won't have an effect on any symptoms that you are presently experiencing. These symptoms are due to residual damage from past relapses.

 

I agree, there are risks associated with DMDs, but these risks are mitigated by close monitoring. You would need to be able to see the future in order to say that the risks outweigh the benefits.

 

You should have another conversation with your Neuro, if you still wish to adopt a DMD. Obviously, You'll need to agree to accept the risks, but your main argument is that you wish to avoid future relapses, rather than waiting for them.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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