Hi everyone Need some advice. Yesterday I felt like my left foot was burning now this evening I’ve noticed my whole leg. At Xmas my left side became reduced sensation and generally just adds to my whole body but this burning is different. Is it a relapse. I’m on 600 mg pregabilin and 40mg Amitripiline at night At the moment I’m on extavia. The neuro says is a relapse may the big one in June funny things happened October. Big relapse in November the left side numbing December. Then another relapse in march and some eye things lady month. The doctor asked me to check whether it was def rrms but she said it dec was as there was definite improvement in the major relapses . But considering all the stuff that happened it seems quite active to me. I taught dancing up until 18 months ago. My problem (which is not a problem is) that my orber muscles are pretty strong and my balance was excellent having been a trained dancer. Now my neuro wanted another scan with dye in April but non were active but there was new leisons. Could that it be I for scanned the month it decided to behave. She had questioned tysabri or Gilenya. Now I know there greater risk but as a single mum I can’t afford to wait and see If extavia works. My neuro is lovely and I do trust her but I’m not sure that extavia will. She did say the first 12 months can be the worst and it may now be Calming down. She said one more big one and you will have to change. On a positive note I got my home report done yesterday so should be on the market next week, and I have viewed4 bungalows 2 or which were overpriced excellently decorated does not mean paper peeling. One was tiny and overpriced for the money i would be as well buying a caravan and saving my money. The 4th I loved. It’s been on the market over 2 years hasn’t been lived in for that period of time. Is spacious but not too big and would give me somewhere away from kids. Is wheelchair friendly should I have another bad relapse but thinking positively that won’t happen lol. But they are now saying Ny reasonable offer now it depends what they class as reasonable dad thinks I’m thinking cheeky but they haven’t had a single offer in 2 years so you have to chance your luck. Anyway off the subject of my original post Thanks em x
I’d say that since you are having relapses you are not on the right DMD. Your MS does seem quite active.
There was a post on the Barts and the London blog (by a hospital neurology team on switching from interferon if it fails (from the head neurologist, “In my experience only 20-40% of MSers respond to interferon-beta” [Exatavia is interferon-beta.]). (http://multiple-sclerosis-research.blogspot.co.uk/2014/02/clinic-speak-horses-for-courses-which.html). The decision aid on switching has not appeared yet but your neuro seems on the ball and is the neuro responsible for you. In Scotland BG-12 has now been approved (NICE are looking at it still for England and Wales), so that might be another option.
Re. the scan with dye: it must have been at the wrong time, as you say. The new lesions showed there had been activity.
I think when considering the risk of drugs we have to consider the other side of the problem - the risks from ineffective treatment.
Glad you have your home report and good luck with the hunting. The 4th sounds good! Good luck!
On drug options. I’d just posted the above to see a post “BG12 Tecfidera given green light in England”. In Scotland there’s also Lemtrada. (Again, will NICE also give the green light?)