New to Shift.ms
Hi everyone, I am new to this site. I was looking at getting Sativex from my GP and hospital to treat spasms and stiffness in MS. Both refused. So I was searching online to see what to do next and came across Shift.ms. I am not usually a joiner at all but so much of what I read here made me realise that there are others who have the same attitude to me at being diagnosed with MS.
I was diagnosed in October 2019 but I think it started about a decade prior to actual diagnosis. My initial symptom was investigated (bowel urgency and incontinence) but was put down to child birth trauma. It was only when I started getting balance and muscle issues that I was referred to a neurologist, scanned, tested (lumbar puncture was particularly nasty) and diagnosed.
Some of the comments that struck me as familiar to my experience as I browsed this site included "I thought I was invincible" - I did, "Living with MS is shit" - it is, "is MS part of me or separate to me" - still to be decided which it is for me and "there are positives to having MS" - really? I am still thinking about that one.
So I am pleased to have found a site where people are honest and upfront about life with MS. What a horrible condition but I am glad there are people around who understand.
I'm 55 and it seems I have transitioned to SPMS as I haven't had active inflammation detected for years but still have a gradual decline it seems although I am on O now and keep trying to eat cleaner and do all the right things ;-) I have told my neuro that I can still do most things I just can't do them very long. It is like my battery just discharges faster. He labeled that fatigue and said maybe Modofinal would help but insurance said to try Amantadine first so I am but was a bit frustrated. I don't think it really helps with the battery thing but has pretty much shut down the spasms I used to get when sitting at work mid afternoon and the ones that started right at bed time so I'm keeping it for that improvement ;-) But mainly I go with some exercise (especially an hour before bed or so) that includes something active (rowing or stationary bike) and a lot of stretching. Seems to help me- Good luck and welcome
Hi Rachel68 i have had m/s now for 20years in February you talking about sativex not very good need to use to much to get proper effect and the cost to NHS is costly being about £70 for one small bottle so the best thing is to get cannabis and put in food or hot drink or smoke with or without tobacco.