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

2 months ago

@stumbler Thanks for your reply.

I’m probably in some version of denial and should just take the drugs (have been offered Tecfidera or Aubagio). It’s just with such a long gap between symptoms (ON 2001 aged 37; sensory stuff 2019 aged 55) and having totally recovered from both the ON and last year’s symptoms, I’m wondering if I really want to start a DMD right away. I know the tip of the iceberg argument would say ‘do it’ to prevent possible future damage / deterioration and that it can be happening silently in the background, but a very strong gut feeling says step away from the drugs (at the moment at least). I’m in no way anti-conventional medicine though so am faced with quite a decision.

All this is complicated by my first appointment with MS consultant last Friday being over the phone – he said he’d show me the MRI if I was there, that he couldn’t tell how old the lesions were. I didn’t think to ask how many there were etc. Really not a fan of phone appointments. He asked if I could walk 1000 steps – I said yes but didn’t think to say I can walk 5 miles without stopping without a problem. I regularly walk 2/3 miles. I said my balance remained slightly worse but stupidly didn’t specify that I meant balance on one foot (used to be able to do it for around 10 minutes, now it’s around 4). So I’m wondering if he thinks I’m worse than I am. He’s put me down as a 2 on that EDSS scale for example.

Oh well, the pondering and processing goes on!