So, for those who’ve come late to Boudicas party, this is what happened.
Poll was diagnosed with PPMS, and was getting her head round that, becoming more disabled over time. But getting on with it, joining the forum here and becoming the stalwart that she is today. Learning all about MS, it’s symptoms, treatments, problems, etc. Supporting the forum members (PPMS, Everyday Living and Newly Diagnosed). 8 years later, she was told, ‘oh, you don’t have MS, you have HSP’. This is Hereditary Spastic Paraplegia. It shares some symptoms with MS, but generally affects only below the waist. So our Poll, had to learn a whole new load of stuff about this horrible condition, one of the worst this about it was of course the word Hereditary.
And although she knew no one in her family who’d been diagnosed with it before, she was understandably worried for her daughters and grandchildren.
Poll lived with the HSP label for 7 years. She continued on this forum as no one would let her leave. Until finally she decided a few months ago to get the genetic test that would definitively confirm the diagnosis. This is what she’s had the results of today.
Obviously, it’s a relief that she doesn’t have to worry about the succeeding generations who could’ve been at risk. But. What the F happens now. She’s still very disabled, but has no diagnosis. This must be one of the most severe cases of Limbo there’s ever been.
Imagine having got your head round diagnoses of two bastard diseases. And after 15 years to be told ‘oops, we don’t know what’s wrong with you, and if you don’t mind we’re not in a great hurry to find out!’
And of course, Pollywollydoodle (all day long) will I’m sure, be back at her usual post of delivering compassion, sympathy and help for all who need it, once she’s got her head round this latest shocker.
I’m really glad for you, and Mr Polly that you don’t have to worry about your family getting HSP. I’m kind of glad you don’t either, but chuffing hell lass, I do feel for you. This is a bag of shite to be delivered as your Mother’s Day present. I suspect this is the worst suffering of Limbo that we’ve seen (not necessarily the longest in limbo, but having two shitty diagnoses and still being left hanging!)
And of course she is a rare and beautiful creature. Someone who is naturally cheerful and who has helped hundreds if not thousands of people on the MSS forums. And been a wonderful friend to me.
Love Sue xx