Feel like I'm made of jelly!!!

[zoefromsussex]

Hi all, just wondered how everybody is doing? I met my MS nurse specialist yesterday to get things moving with the Copaxone. I've to go on a 1 day course at the end of the month and then wait to see my neuro next month. The nurse says the Copaxone should be a good first choice but we'll see how I go because the diasease activity just keeps coming and coming at me. MS was first suggested after I had an attack of ON in Oct 2011 and since then I've already had a further attack of ON in my other eye and now it seems I could be relapsing again but this time my legs are the main thing. They're weak & numb all at the same time and everything (hands, arms, feet) feel very shaky and tingly plus the vision in my right eye is playing games with me! Anyway, no steroids for me as my neuro doesn't do an mri unless he really has to and I won't take steroids without absolute evidence of an attack. I'll obviously have to reconsider that if my legs give up though.
Hope you all have a fab Easter with plenty of chocolate!
Zoe x

[zoefromsussex]

That's exactly the same as my neuro; he only arranges MRI if he's about to switch treatment but he's happy to give steroids any time. I feel I only want to take steroids if my leg stops working or something vital like that so I'm waiting this one out. If the weakness gets too bad I will have steroids but I'm trying to just get exta rest (not easy with a 1 yr old & a 5 yr old! lol) and wait for it to pass.
The MS nurse said I can try the copaxone to see if the disease activity slows down but I may need to consider Tysabri.
Happy easter to you too!

[Guitar_grrrl]

Interesting - my neuro isn't into ordering MRIs unless I'm switching DMDs.  That said, if my signs and symptoms warrant steroids, he has no problem ordering steroids.  I don't want them unless I absolutely have to (say, my leg stops working, or something).

Happy Easter, and good luck with your decision.  If your weakness gets too pronounced, I say go for the 'roids.

[kwarendorf]

I'm not sure that DMDs, like Copaxone, are supposed to improve current symptoms. As you mention they are used to alter the progress of the disease.

It seems to me that you have put yourself between a rock and a hard place. You are seeing a neuro who won't order MRIs and you won't take steroids, which may relieve your current symptoms, without MRIs.

Looks like on or the other has to give...

Kyle