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Newbie hello

Hi everyone. I've had M.E. since 2001, but after new symptoms this year the GP thinks it could be M.S. instead after all. Sadly, the current waiting list here for non-emergency neurology appts is over a year (!), so it'll be June 2024 before I see anyone, but that's OK - I'm trying to be glad it's not an emergency, rather than frustrated by the wait! If it does turn out to be M.S. it'll be the relapsing type (phew) and I've spent the last 20+yrs "managing symptoms" so I suspect the change of label will make very little difference in practice - except that maybe I'll be taken more seriously by the medics (?). No questions yet - just saying hello and thanks for being there! I might not say much on here, but I'll be listening in and learning as much as possible until the appt finally arrives. :)

I think it’s quite common for those diagnosed to look back over many years retrospectively and wonder when it started. My early symptoms felt so unimportant I put them down to stress for a long time. I didn’t listen to my wife and have always been healthy and fit so just never thought I could have something like MS. My only warning note would be that a hard relapse can cause serious irreversible damage (even if you’ve not had one of those yet). I only got a proper diagnosis and started on Disease Modifying Therapies after my leg stopped working completely for a week. It forced me and the docs to take notice. I recovered most of the movement in my leg but still have other symptoms now that won’t be reversed. I don’t mean to worry you but do keep a log of changes and don’t skip the GP if you continue to feel worsening or new symptoms. It’s really hard to diagnose MS so docs need all the help you can give them. I understand those long waiting lists (I’m on the same myself now) but it is possible to get things moving faster if the need increases. Good luck!


Hi! I'm in the same boat as you. Just waiting, waiting and waiting. Already waited 12 months for neurology and was told to wait another 12-18months. So booked a private appointment for November. Think it was £260. I've been keeping a daily diary so that when I do see someone I'm not just scratching my head and trying to remember symptoms, patterns etc. Just a few notes each day soon builds up and you really get to see the cycle of symptoms. Plus it's fantastic evidence for your appointment with a consultant. Best wishes, stay positive and welcome to the every growing community. Lots of fantastic people and information on here.