Forum

Diagnosis?

i was diagnosed in October with MS via mri and LP. My neurologist decided it was RRMS even though I have never had relapses or remittances. I am 60 and female.

i wonder if he was doing me a favour as it enabled me to access DMDs.

My concern is if the DMDs only work on RRMS what’s the point. OR do DMDs actually work for PPMS butNICE have decided they don’t?

i just don’t want to go down the road of possible side effects etc with DMDs when it’s to no avail.

thanks

sally

I was first diagnosed RRMS. A few months later it was changed to PPMS. I hadn’t taken any DMTs. So I would wait a while. I only take Baclofen and Amitriptyline if needed to help me sleep.

Hi Sally With progressive ms symptoms can still feel to get bad and then ease up which can be described as a form of relapsing. The difference is that we don’t have episodes when we feel almost unaffected. If your symptoms are quite bad at the moment, which is often the case when we’re diagnosed (hence the reason we are usually tested at that time), it may be worth trying the drugs as it may ease some of your worst symptoms. Weighing up how much worse you’re currently feeling compared to the last few months it may or may not seem worth chancing the drugs and the potential side effects. There’s also the possibility of stopping the course of treatment if it’s making you feel worse. Only you can make the decision, all I would suggest is to make a list of pro’s and con’s and discuss them with family, your neurologist, ms nurse or anyone else you feel will listen rather than force you to a decision. Sorry I can’t be more help, but you may want to go on the relapsing remitting page and discuss the drug they’re thinking of prescribing with someone who has actually taken courses of that drug. What you read on the pamphlet about a drug might not be a realistic picture. Good luck with it. Cath