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New Relapse? Numb Toes

Hi all,

Well I am back.

I was diagnosed with MS in 2015 (Optic Neuritis / L’Hermytes)

I have been on Tecfidera since and have the occasional weird sensory symptoms but nothing serious.

About 4 months ago i had issues swallowing and MRI confirmed some lesions in my spine (they reckon they didn’t do spine before) and a new one in my brain (although they said this shouldnt have affected my swallowing)

A week ago my little toe felt a bit numb and weird. This has progressed to sometimes being all my toes and ball of foot. When i just had a hot bath i could actually feel it in my other foot but not as bad.

I have mentioned this to MS nurse and await docs reply.

I am wondering if i will change from Tecfidera. I am wondering what to do if it would be best to go onto another treatment or stick it out with Tec. What treatment would be best to go which is most effective.

Kind Regards

Spluff

hi Spluff

Tecfidera is one of the best.

the better ones are Lemtrada and Tysabri (there may be other newer ones too) both of these are by infusion.

you will need to discuss this with your MS nurse and/or neuro.

wishing you a speedy recovery.

xxx

Thank you for reply. Has anyone else had this where it’s numb on 1 toe and ball of foot but when get home the numbness spreads

Hello Spluff

It does sound as though Tecfidera isnt 100% working for you. Maybe your MS has got a bit frisky and needs something a bit more serious. Like perhaps Tysabri.

Numb toes were actually one of my first symptoms. I can’t remember exactly how they spread, but I know they did. Steroids got back most of the feeling but I don’t think I’ve really felt my toes for over 20 years! So can’t really help there.

If you were to be offered Tysabri, and were tested as being JC Virus negative (which means you’re not at risk from the big nasty, PML), I’d go for it. It’s possibly the best DMD. Other than that, there’s Ocrevus which has a pretty decent side effect profile. And Ocrevus has in its favour that it’s 6 monthly infusions (after the first 2).

Best of luck with whatever happens next for you. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more info on the other big guns in the DMD world.

Sue