Mother's Day

Well…Mmmm…Think I’ve just received an early mum’s day pressy!!!

Been crying a bit…relief…Dispair…But certainly not sadness!

Why? Cos I’ve just had a letter from my neuro telling me that nothing genetic has been found in my genetic blood test!!!..

I’ll quote the wording…

No pathogenic variants were detected in the gene analysis. This result reduces the likelihood that the patient’s symptoms are caused by a pathogenic variant in the genes analysed.

So there chums, what do you think?

Of course the most WONDERFUL news is that my kids and grandkids won’t get this HSP…Not 100% anyway!

So now Boudica has to get that big fat ? mark out again!!!

It’s good innit?

Eee dear me. I’m a freak of nature! But so very uniquely rare! Get me, eh!

Pollsx

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

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Thanks Sue, for taking the time and effort to explain my history.

And a huge thank you for being on the end of the phone line for me and my tears.

I do love you.

Ok, I’m, putting the Kleenex away now!

Pollsx

God girlie so so sorry you find yourself in this position again. Dumbfounded as to what to say, its so incredibly horrible. Im thinking of you, lots of love Tracey xx

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OMG!! How can this be??

I am so happy for you on one hand and in complete disbelief on the other that some one could suffer as long as you getting through so much and still not have an answer!!

Please Poll never leave us!! You are a staple on here and also a very rare thing a truly interesting and inspiring human and there really isn’t that many of those!

Life is a challenge and some people don’t half have the tables tipped against them!!

Onwards and upwards lovely xx

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ooooh! well done poll, you haven’t got ppms and you haven’t got hsp either.

so enjoy mothers day on sunday.

i know you are still left with a big question mark but you already knew that you are unique.

i’m confident that you won’t leave us.

big squishy hugs and sloppy kisses to you.

and have a drink of something nice.

carole x

Course I’m not leaving this forum… Tried that once before and soon had a lobby of folk at my virtual front door, all up in arms at my thinking about leaving!

Where else would i get my daily fix of laughter at the AD thread. And where else would i get such compliments?

And how else would i fill the time that i spend here with you lovely lot?Nay, i don’t go away that easily!

Pollsx

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Wow Polls. Just wow. Double whammy, or should that be triple whammy? And you still stay smiling. You’re some woman. You inspire me. X

I have only been on this forum for a couple of weeks and already you have stood out as a strong force to be reckoned with! I don’t know you Polls aka Boudica but I already know that you are indeed, unique and will deal with all this with the strength and confidence we all envy.

I concur with Poppy6488, you are an inspiration! x

I am truly awed by the caring words I`ve received from members and friends here.

I will continue to offer support and advice where I can.

luv Pollsx

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Poll,

You are unique, however frustrating your results are. Why have something other people have when you can just be yourself?

This site would be a barren place without you. Your support, advice, sense of humour and love of life keeps us all going.

Enjoy Mother’s Day you’re one special Mum.

Jen xx

x

“Eee dear me. I’m a freak of nature! But so very uniquely rare! Get me, eh!”

More like a Force of Nature.

AD