At the End of my Rope and DESPERATE
Hi everyone. I have had MS for 4.5 years, received first round of Lemtrada in May 2016. I have gotten much, much worse since Lemtrada. Coincidence? I stopped Aubagio to go on Lemtrada. Does anyone think that maybe I have gotten worse because of stopping Aubagio? I can barely walk and my balance is pretty much nonexistent. I am sooooooooooo depressed. All my neurologist keeps saying is "Just be patient." I can't continue like this. Is my neuro giving me false hope?
Does anyone have any advice or thoughts for me?
I have been going to physical therapy regularly. I went to PT on Thursday and my therapist said that she was canceling all of my future appointments because I'm not getting any better and that I'm not showing any signs of improvement. That was a slap in the face! I have tried to stay positive and I do keep moving.
Sorry to be such a downer. Just looking for some support
@cheryl118 , we do have to be patient and we have to maintain a positive attitude. Lemtrada is arguably the best treatment currently available for MS, but, it is acknowledged that it may take the 2nd dose (after a year) to effect any improvement. It is obviously disappointing that the physio has given up on you, but you must continue the prescribed exercises. Keep doing what you can. The Lemtrada will hopefully have stopped the MS progressing, so the only way should be up. Hang in there. :wink:
I think it's awful that your therapist has given up on you because even if you don't appear to be improving, the PT would be helping you RETAIN FUNCTION, which is a legitimate aim of any neuro physio regime. I agree with @Stumbler - don't give up on the exercises and do as much gentle exercise as you can, because that will help. While you're waiting for Lemtrada to work, why not direct that stress into starting yoga, Pilates, swimming or a combination of them? They're all gentle, won't upset the MS, will build stamina and reduce your stress levels - which in any case will be worsening your symptoms. I think you've been sold short - you deserve better. Big hugs, xxx