Reply To: Diagnosis – the long and winding road

Home Forums Speakeasy Diagnosis – the long and winding road Reply To: Diagnosis – the long and winding road


dangooch
1 month ago

@henrietta To say it’s a lot to take in is a colossal understatement and, as one who was also recently diagnosed with RRMS, I do feel for you.

Just on the topic of topic of drugs, everything everyone else has said is true but I wanted to say that I shared your dilemma. I’m not anti-conventional medicine, either, but few would choose to start taking what are, as @stumbler says, powerful drugs unless they absolutely have to. So during my first post-diagnosis chat with my MS nurse I asked what was the harm in deferring commencement (irrespective of which drug). I must admit, had she asked ‘Until when?’, I would have said I didn’t really know – it was simply that the instinct was to delay. Her reply was that the risk in putting it off is that one might at some stage suffer a relapse and not recover (or recover completely) from one or more of its effects.

That was enough to persuade me to accept a recommendation of Tecfidera. I’ve now been on it a month (first follow-up appointment today) and so far I have been pretty ok – although I don’t imagine that’s anything other than coincidence.

I understand that ‘they’ are quite good when it comes to keeping an eye. Thus, for instance, with Tecfidera there will be regular blood tests to check that the white blood cell count doesn’t drop to the point where there is a risk of susceptibility to that wretched brain virus thing.

The severity of side effects will always, I guess, be a matter of luck but again with Tecfidera the explanatory notes do say that the worst are usually experienced within the first month. There will be countless other users out there who would be able to comment far more authoritatively.

Hope this helps.