Dear friends - this is to say thankyou to a wonderful community which has given me great support over the last 2/3 years. I now have a diagnosis and my condition isn’t PPMS but PLS, primary lateral sclerosis, a very rare form of motor neurone disease. No known cause, starts in the 50s and 60s, slow degeneration over the next 10-20 years. So I will now have to bin all my MS research and start swotting up PLS. Not like the Stephen Hawking version, btw, but wheelchair etc inevitable. Meanwhile intend carry on as best I can and just adapt as I go along.
it has been a privilege to share your stories and your lives. So much courage and humour, and so much determination to live as fully as possible despite frustration and physical limitations. You are an inspiration.
As I ride off on my scooter into the sunset I send you all a cheery wave and every good wish for the future.
Lynda, its been lovely to have you on here - please don’t feel that you have go. Not everyone on here has a diagnosis of MS. We are all here to support each other. Wishing you all the best,
Ditto Ditto come and see us, we wont tell on you honest … Sorry to hear your diagnosis but now you have got a label you can hang on it and its exciting coz its rare I hope you are OK with it not that there is much you can do if you are not. Its nice to know what it is that is wrong I remember when I was diagnosed all those years ago it was the knowing something was wrong but not knowing what or why that was so frustrating. So dont dessert us come on by and say Hi …see what I did there? my poetry is improving
Thanks so much, everyone. I feel hugely supported by your kind words. Mebbe I won’t ride off too far,after all. I don’t know yet if there is a forum for members of the elite PLS brigade,but if so, they won’t be as generous , funny and bloody-minded as you lot!! You’re right, better to know than be in limbo. My son raised £2500 for MS with a marathon, so he’s now got to get back in training to do another for MND.
hope you have a good Christmas. Don’t overdo it - there’ll be another one along in a year…
I was a teacher for thirty two years. I am beginning to wiggle my finger at you. Do not be afraid. You were not talking in assembly. There is a suggestion of care in my tone:
“Lynda, after all you have shared with us, surely you cannot just leave. Would you abandon a pet because you wrongly assumed its gender? Would you desert a friend because you learnt one of their untold secrets?”
Remember, we use labels here but we don’t discriminate against them. You have a unique diagnoskis but we still want to be here to support you.
Steve that is so beautifully written. Linda I hope Steve’s words help, I’m without an ms diagnosis too although I strongly believe that’s what I have, its just I haven’t got the energy to fight for it at the moment but I’d be so sad if I couldn’t be part of this forum, it’s the place where people understand and where I feel I belong I’ve been in a wheelchair for 3 and a half years now and I still feel sad over it, perhaps like Steve says it doesn’t matter. My assistance dog Frazer doesn’t care what I’ve got he just loves me and is always there for me. I think we can get too hung up about diagnosis. Love Michelle and Frazer xx
You’re all so kind - how could I leave you now? I’ve got your stories in my head - I wouldn’t know the next episodes! And as all the symptoms overlap, I’m bound to need advice. And Steve, your wise words are to treasure.
the registrar I saw was a lovely young man - spent 20 mins on my notes before 30 mins on me. He said he’d get a black mark for not sticking to a time limit, but after four years of waiting, I felt the NHS owed me.
son, wife and our newest 4 month old grand daughter, Grace, arrive tomorrow so all go (at the usual slow speed). Putting up the tree nearly led to divorce on Sunday but we’re back on speaking terms…for now.
Hi Linda, I am someone with a variety of diagnosis’s. Neurology I am finding out is a guessing game. What exactly made them change their mind on your diagnosis. I am collecting labels of what I “might have” but PLS has not been mentioned and I would be interested in your diagnosis history.
Hi Linda, I am someone with a variety of diagnosis’s. Neurology I am finding out is a guessing game. What exactly made them change their mind on your diagnosis. I am collecting labels of what I “might have” but PLS has not been mentioned and I would be interested in your diagnosis history.
Well, Moyra, where to start? Summary: about four years ago, foot drop, left hand side, then right,balance affected,stiffness, spasticity, lumbar puncture, MRI etc all normal. One stick, then rollator, now a scooter. PPMS symptoms all there but no test evidence. This summer, voice affected, hoarse, nasal. Finally they have decide PLS. If you go on the MND association website and look at PLS, you’ll see how the symptoms overlap. It’s still a slow degeneration, no treatment or cure. They say decline is 10–20 years, but it’s not clear where that begins. I’m now 67, so I guess if I manage 20, I’ll have done well! Not how I envisaged my retirement! Theses neuro conditions are slow to reveal. If you imagine a line of runners, it’s like watching them and seeing which one eventually pulls away. Hope this is helpful.
I can save all my dittos as you’re saying, glad to hear that but sorry you have any sclerosis to deal with! I suspect a lot of things are much the same as PPMS to be honest.