First time on here so hello everyone. I was diagnosed with Clinically Isolated Syndrome in April 2015. I have spots of inflammation on the brain and neck and possibly spine. My neurologists notes state ‘High likelihood of diagnosis in the future’ I was sent away to buy high strength Vitamin D with the parting shot ’ I hope I never have to see you again’ I agreed. Since them I have tried to do everything I can to keep well and apart from an altered sensation in my feet (finally back in my running shoes) and some tingling, especially in this weather I feel really good. I’ve been looking for a Facebook Support Group and did look initially in my area, Spalding Lincs but I can’t find much there or in Cambs, Peterborough or Norfolk. I’m sure I’m just looking in the wrong place. Can anyone help? Anyway I’ve started a group of my own in the hope that someone will join in the discussion about keeping well and motivated, diagnosis or no diagnosis. All I have is a page and a title. It’s called ‘Doing cartwheels in the Multiple Sclerosis waiting room’ Would love to share ideas of what seems to work well, especially good to hear from others in my area. Thank you x
hi lisa
i belonged to the ladies with lesions group founded by tanya downs.
sadly tanya was killed in a hit and run.
a new group was set up F.R.I.E.N.D.S.
however the original group used to meet up every few months at the local harvester.
there’s nothing like meeting online friends in the flesh.
so join existing groups and ask if anyone would like to meet up.
by all means carry on with your group.
i met up with two of the ladies with lesions group at the ms society meal and we reckon it’s time for the LWL group to meet again soon.
there are about 8 of us who meet up and they have become good friends now.
we all live in the bolton area except one who lives in chorley, just one junction up the M61.
good luck
carole x
Thank you for the information Carole. I really appreciate someone responding! I’m quite a way from Bolton but will definately look at the group. Thnak you x
Hey LisaG.
Just replied to your ‘Shouty post’… I live in Norfolk. There’s a good ms group in Dereham, but ‘for young folks’. I’m obviously too old to be classed as that, but it’s quite good, although probably too far you…
My wife runs (doing the RunNorwich next month), but I don’t.
Is your FB group a closed group, or public ??? Just wondering…
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