Wotcha to you too M! Still find my sense of humour somehow. been a long rocky road to get back here. xxxx
Hiya Crac…didn’t you used to spell your name with a K? Youve sussed me...Ive been in nick for running over too many ignorant folk in my wheelie …been in a harem, but kicked out for being too bolshy and as for the ransom…they paid my hubby to take me back!!! Nice to be back…been watching from afar…but they wouldn’t let me re-join! I had to give a hefty donation! xxx
Hi CC. Thanks for your reply. Yeh, neuro says I have no lesions in my brain, but significant demylination on my cervical spine. They wouldve been hard to spot all those years ago on less detailed scans. Great to hear you are still on your pins..albeit with pain. Just watch those miniscule lumps in the floor! They found me every time. Ive to go back to out=patients somewhen, to see if any meds are offered…doubt it…as only Ocrevus is offered to PPMSers, who have less than 15 years service!! Keep the faith! xxx Been a full time wheelie for about 18/19 years now…
Hi Janhh, thanks for your welcome back. I have looked in from time to time and seen how so many familiar names are still present. Good to be amongst you again. xx
yes - there’s no ‘k’ in the Welsh language so being a Taff I changed my name slightly. (there’s no j k q v x in Welsh!)
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What a lovely surprise to log in and see that you are back Poll. Shame that you " qualify" but great to hear from you again Love Ell
Hi Ell, just replied to your PM. Thanks xx
My neruo told me use your pins or loose your pins, so i am determined to keep on them even if its only short distance. I know my limit so i never push it. my limit is not very far but its all i need. for now anyway.
I went to neuro about ocrevus. Its way too complicated with no real proof it does anything but wipe out our immune systems when we have had PPMS too long like we both have. He said its best when the disease is in its infancy. I would have to get loads of blood tests and MRI to see how active the PPMS is, and quite often old timers their progression can have a hiateous. If its not active no ocrevus.
I am not sure i fancy all that messing me about i am ok at the moment coping as well as i can. I am 68 its too late i think for me, but hopefully it will help a lot of young uns with PPMS. I know it has good results with RRMS as well.
wow you have been in a wheelchair a good time and still have your sense of humour you rock hun. xxxx
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Hello Pollywollydoodah
You are most welcome back to this place. Obviously you’ve lost a few marbles on the way. You were last here in October 2017. So not 7 years! (I checked my PMs!)
You have honestly been dragged through the mire on route to an actual diagnosis. I can’t believe how dreadful it’s been for you, PPMS, then HSP, then maybe SP but not hereditary, just definitely not MS! Then finally PPMS again!! What a *#€^+§ of a journey to wind up here again.
I’m so sorry you’ve had so many years in and out of limbo. By now you are a world class limbo dancer. Even if it’s just in a virtual way.
You have been missed here, not least from the newly and un-diagnosed part of the forum. After so many years, you’ve become an expert in so many aspects of disability, financial support and MS and can help support and advise the people who need your kind of help and wisdom the most.
And of course you’ve been missed by so many of us. I can’t say I’m glad you have PPMS exactly, but I am glad you have a diagnosis (hopefully one that’ll last!). Sorry it’s taken me so long to say welcome back, if you’ve gone back a few pages you might see that I’ve been a tad under the weather after breaking my femur/hip!!
I do hope you and yours are all as well as can be, husband, family, dog and co!
Sue xx
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Hi Poll so nice you have come back, so sorry to hear of your diagnosis but pleased you are caring on with Life. Best wishes for your courage.
Janet
x
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Thankyou Sue, for your kind words and welcome back. This thing Ive got about 7 years, is connected to the local hospice. I started back there in December...and that was after 7 years! So me marbles are more sort of mixed up rather than lost altogether. Yeh, it has been a helluva ride! Sophies good ta…shes 5 now. Hubby is 71 and a tad frazzled...to say the least. Ive had some hiccups with carers…still got Best Bev…we never did carry out that Boudica`s Best Bev Bits cloning malarkey did we? I know about your horrible leg break and boot camp in rehab…you sure it wasn’t for the wine consumption? Lol! Look forward to chatting more. Polls xxxx
Cheers Janet xxx
Hi, Very interested to hear about Spinal MS, my lesions are only on my spine and eyes and I have been tested for Neuro Mylitus Optica (NMO).
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Ah NMO aka Devic`s disease. TM ie transverse myelitis comes into it too sometimes. My neuro has done this test…although I have never had eye problems.
Hiya Poll, so nice your back. I’ve been away for a few years as well and it was only today I logged in and I don’t know why, you must have been sending me psychic messages. I’m glad you’ve finally got a diagnosis after all these years. I did smile (which is what you would have liked), trust you to have one of the rarest conditions in the country! You have always been one of a kind. Now your back I may visit a bit more often. You gave me so much advice and support and also laughter about your travels. I’m glad we’re both still alive!! Hope you remember me. Linda H xx
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Welcome back Poll… seems like a few of us old timers have come back to the fold! Brilliant that you finally have a dx!!! Lots of love darling, Pat xxx
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Hi! Are you the \Linda form South Shields or the Linda who I have my scooter too? xxxxx
Hi Pat, great to chat to you too. Have answered your PM xxx
Hi Poll, no I’m not either of the two you mentioned. We haven’t connected in a lot of years, but you gave me a lot of help and support when I joined a long time ago. I’m in Dorset. Linda xx
Oh Dorset eh? Well thanks for reminding me and hello!