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help me to decypher email from neuro

"The results are available and interestingly did show some acute activity in the ms - 2 small areas lit up when we gave you the injection of contrast during the MRI - this means they were acutely flared up which fits with your symptoms.  The debate now is whether this attack (which will hopefully settle) now means we should be looking at some new treatment options."

 

So there you have it - I came off Rebif 2 years ago because it really didnt agree with me.  I spent 3 days in hospital over the weekend on IV steroids.  I have blurred vision in my left eye, pain in my left leg and numbness on my right hand side.  While its good in a way to know I wasnt imagining these symptoms I'm devestated that 2 lesions have shown above. I just wanted to get back to work next week and life as normal to continue...

It is so hard when half of you wants the MRI to show something up, so you're not going mad or imagining things, and the other half wants nothing to show up and for them to tell you everything's fine and you can go home and forget about it.

Well, at least the tests showed what you knew already, which is that there is some MS activity going on.  This does gives you and your neuro a good starting poing for considering new treatment options for you.  It is always horrible when new symptoms become 'official' because they show up on the scan, but now you are in a position to do somethig about it.  I hope that your neurologist has somethning satisfactory to suggest and that, if you do try anothe DMD, it suits you better.  Try not to be too knocked back by the results.  The best way to get back to 'normal' as quickly as possible is to make sure that, if your neuro thinks you need a new treatment, you get the best one to deal with your MS.

I hope it all calms down for you very soon.

Alison

x

Hi Satgirl,

Which bit needs deciphering? He’s saying you had/are having an attack, or relapse. Which is not a huge surprise, I think, as you’ve been in hospital with it quite recently, if I remember rightly?

It is normal for lesions to show when the MS is active. In fact lesions are pretty par for the course with MS. So there’s no need to be devastated that you have some. That is what MS means. We’ve all got some.

Number of lesions isn’t a very good predictor of disability. It’s possible to have quite a few, and still be walking around not knowing you’ve got MS. Conversely, just one in a crucial place might have very disabling consequences. Just luck of the draw, really.

He’s thinking because you’ve had another relapse, and apparently quite a bad one if you were hospitalised, it might be time to consider a replacement for the rebif. But if this the first serious episode in two years without treatment, you’ve been doing pretty well, and there’s still a good chance you’ll recover and go back to work. Just maybe not as soon as next week.

Tina

Thanks Guys,

 

I know I need to consider a DMD again, I just didnt want to. I agree that I have been doing very well, thats why I was able to carry on as if nothing was happening so I suppose this brings me back to how I was feeling 5 years ago when I was first diagnosed.  I'll get there, what choice do we all have - just wanted advice from people in the know.

 

Thanks again.