Plummeting mobility!
I’m not on medication for my PPMS & only diagnosed mid April. Tbh I feel totally abandoned by my neuro ms nurse & consultant. The ‘advice/ support’ line for them doesn’t even allow messages to be left, you have to wait for a clerk to answer & they give you a tel appt, if no one answers then you don’t get an appt! 4 hours over 2 days I was trying to get through! My mobility is plummeting, I’m considering cbd oil & wondering how bad do people get before they start using wheelchairs? Col
Also have PPMS and believed I was forgotten until my Neuro retired Then his replacement had me have an MRI and now on Ocrevus as I meet the criterial. It has been 5 years for me and And I now use clutches or a scooter to get around
Hey @collettepage, wow, this has been a tough period to be diagnosed in! (Covid) The thing is, most of us have experienced that our neuro units are massively reduced; mine in London has been redeployed onto the main wards, so it's really hard to contact the MS nurse. So hopefully, your situation is temporary and highly unusual. There isn't a scale regarding using a wheelchair really. For some, regardless of type of MS/mobility, a wheelchair can be a liberating experience, eg, going on holiday, even if technically you don't always need a wheelchair. Try doing a search in the box above for CGB oil to look for previous posts. If you can't get through to the neuro department, you could try your GP for advice. All the best :-)