Hi, haven’t posted for a while. Have tried, but didn’t work.
Anyway, had ON in Feb, followed by MRI and told by opthalmologist at the end of March that there were several areas of demyelination on it and it was “likely” that I had MS. Eventually got an appt for neuro in August but couldn’t wait til then without going mad, so saw him privately this week.
He said that there were 2 old looking areas on the MRI as well as the optic nerve. The only possible symptoms that I could remember in the past, altered sensation in part of an arm and leg, and "prickly "cheeks were 20 and 25 years ago and he didn’t think I could have had it that long without any other signs or symptoms. He said it was the future that was important and he couldn’t predict that , so is arranging blood tests and a chest x-ray to exclude other causes, and will see me again in 6 months or earlier if anything else happens! He also said that if I had any symptoms he would put me in touch with the MS nurse and discuss DMD’s.
I ended up feeling better but not sure why as I’m still none the wiser! I developed the same symptoms as previously when I’d been told the results of MRI. I knew I wouldn’t get definitive answers, but feel that I’m sitting on a ticking time bomb. Am going to start vitamin D which he suggested and try to lose some weight and look after myself in general and try and forget about it!
Just wondered if anyone had had a similar experience or any tips to cope with the limbo.
Sally xxx
I was only in limbo for a short time (about 15 months) and helped through that by blithely assuming that of course it was MS, but “they” weren’t quite sure yet - a result of me mishearing “possible MS” as “possibly MS”! So I mentally accepted having MS way before I was actually diagnosed. In some ways, I think this is quite a good way to go because uncertainty about the future doesn’t change with a diagnosis: we never know when or if we will relapse again, if we will start to progress, what symptoms will come next. We have an official label, but apart from the obvious benefits of easier form filling and access to some meds, there is not a huge difference between “possibly MS” and “MS”. Ah! With one important difference: people in the “possible/probable or my possibly(!)” group have a good chance of never having that second attack. That’s the kind of extra uncertainty that, depending on how you look at it, is rather nice to have: the chance that this will all go away? So, if over the coming months, if doubts break through your, very sensible, look after myself and forget all about it plan, maybe hold onto the “it may never happen!” thought? But hopefully the plan will work really well, nothing else will happen and you can put all of this behind you. Karen x