To ask if anyone with Multiple Sclerosis wants to moan? Or others want to learn about MS?

I got diagnosed from a research study I did as a healthy volunteer. I think it's the reason I've managed to stay pretty well and still working full time.
But it still sucks.
As soon as I started having issues I was put straight into treatment, that was appropriately escalated when it didn't work.
And my neurologist wanted a Guinea pig for Lemtrada, so I had that. Some days are harder than others. And hot weather is an issue.
But I'm lucky that I can still work full time as a nurse. But having had a narrow escape from a 'catastrophic relapse' and being paralysed. I do not take that for granted.

I did not know that! Thanks for this thread, I'll keep a surreptitious eye.

Yes I have it but would like to know more about it, I had optic neuritis a few years ago and was sent to the eye hospital and referred to an neurologist. Once the scans etc were done they confirmed MS, to be honest I have had too many other symptoms and an just taking medication to try to keep it at bay.
I would love to hear other peoples experiences with this condition and their experience of the meds.
I’m thankful it seems relatively mild and pray every day that it stays that way 🙏🏼

10 years diagnosed. Hate it. Much love to all of you also living with a condition most don’t understand.

I know someone who developed aggressive MS in their early 40's, it's such a cruel and as said, shitty thing to get. Hers was very aggressive and within five years she has very little quality of life and doesn't recognise her children and grandchildren. I feel for her DD and GC, as well as her. She goes in and out of a hospice under palliative care, each time they think that she is close to the end. It's an wicked condition.

Interested in this thread — years ago DP had what I can only describe as an MS "scare": optic neuritis, with almost but not quite enough brain lesions to meet the threshold for an MS diagnosis. Somehow what got round my family was that he'd been diagnosed with MS (at the time, info online on isolated ON tended to split into "it may not develop into MS" and "ON with no other explanation and no further MS symptoms is MS but the lucky version"), so we had people coming up to him at a family funeral to commiserate on his multiple sclerosis diagnosis. Odd feeling. Anyway, with the lesions he did have, plus the fact that none of the other possible causes of ON really seemed to apply, we were both watching him like a hawk for years for anything else that might signify MS, and I guess I don't have to say here that that's an enormous list of possible symptoms, that you can get from all sorts of other causes. It's been over a decade now and nothing yet… I don't know if it's possible to have MS go to sleep for over a decade then come back.

So since then, with all the stuff I read about MS at the time, I've wondered how people live with such an unpredictable and sometimes invisible disability, that the rest of us don't really know anything about. I guess shitty thing probably covers it pretty well.

I feel you ! Recently diagnosed after years of being fobbed off by my gp being told it’s just health anxiety , to going for an eye test and sent straight to hospital with severe papilledema had a ct and MRI which showed lesions on the brain , then a lumbar puncture which showed high pressure on my brain and then 5 days later a neurologist appt who combined the evidence and all my symptoms and diagnosed me with both chronic intracranial hypertension and multiple sclerosis. It’s been a crazy crazy month and I’ve not taken it all in yet but I’m patiently waiting for surgery to fit a shunt in my brain to help the CIH and having weekly lumbar punctures. After 4 years of the gp making me feel crazy it’s great to have answers but also very daunting as I don’t know much about either condition 😓