After many, many moons I have re-joined the forums! I see quite a few names from the past when I was a regular here. Great to see you!
Last month I went into The Walton Centre…a hospital in Liverpool, which is the only hospital for neurosciences in the UK…It is a Centre of Excellence.
I was still without a diagnosis as different neuros (16) kept changing their minds about what is wrong with me!
Anyway, at this wonderful hospital I got that elusive diagnosis…after over 20 years of searching and being tossed hither and thither!
I have Primary Progressive Spinal MS. It is very rare and I am only the 2nd person my neuro has seen with it. Even the MS Society was unaware of it and have been very helpful with information.
So Im ready and willing to offer support, receive support and generally chat along. I have been watching the forums and see that hilarity still reigns at Durer Towers. Remember when we were going to invade Blackpool under Boudicas directions? Fun times!
I’m not sure what to say about your diagnosis. I imagine you are probably relieved to have an actual name for what you’re enduring all these years. Any treatments lined up?
Hi Poppy and thank you for your kind comments. I am awaiting an out-patient appointment to see what, if any, treatments might be available. Yes, it is a relief to know what`s been going on all these years. xxxx
Are you the lady I meet once in Huddersfield many moons ago, I’d only just been diagnosed, since then I’ve moved on to SPMS, if you are that lady I remember very clearly how fed up you were, so glad at last you’ve got some answers, all be it not want you wanted, but at least you know, good luck.
Hello Jean! Yes, see I remember your name! Yes, you and I did meet up in Huddersfield. Nice to see youre still on the forums too! I went through a very bad few years when a different neuro said I had hereditary Spastic Paraplegia and there was a 50% chance of me passing it down to my offspring.....that idea made me worse than anything else! So yeh, Id rather have MS if I have to have either disease! Nice to be back…in a weird sort of way!
Great to see you back Poll and congratulations (?) on getting a diagnosis! I can’t remember the name of your dog (was she a poodle?) but I hope she’s still keeping you entertained.
Hi Sarah, thankyou but we sadly lost our poodle Lucy 5 years ago. It was heartbreaking. I vowed no more dogs…but caved in and got a new toy poodle from the same breeder…she is Sophie…another gorgeous little girl.
When you lose one it’s so hard isn’t it? However, if you’re a doggy person life is just too quiet without one and they bring so much joy. We’ve got a cockapoo and she makes us smile every day.
I Polly, Yes I thought it was you and well done you remembered my name. so now you’re waiting to see what and if any treatment is available, good luck with that, the only meds I take are Baclofen for the spasm, nothing else for me, but hey we carry on, well what the hell else can we, take care. all good wishes Jean
Hi again, been looking at Ocrevus…as it is being used to slow PPMS…but there is a 15 year limit for use. I have a new problem with my hands…left one in particular…it doesn’t work as it should.
Was thinking about you the other day. You gave so much support on this forum and I loved hearing about all your adventures. Hope you’re pleased you have finally got a diagnosis, despite what it is, maybe you can get some appropriate treatment now. Hope so.
Can’t remember when you were last on here but lots of the original people and lots of newbies.
Hi Poll it is great to see you back. I was sorry to hear your diagnosis but at least you now have one. Hoping it may open new treatment options for you. I was considered for Cladribine on compassionate grounds but the mri did not show new inflammation and therefore I was turned down. Originally I was diagnosed with transverse myelitis but this was changed to single attack progressive. All the lesions are in my spine. I hope something positive comes from your diagnosis. Sue
welcome back Poll! so who paid the ransom to secure your release? or were the other dark rumours circulating accurate - i.e. you were either er ‘confined’ in Newhall or Holloway or had been sold as a slave to a distant Arab country.
Hi Pol i remember your diagnosis of that heridary thing it sounded quite scary, i am glad too you have a diagnoses. It took me 16 years. My neuro and GP still state i have PROGRESSIVE MS, they never call it PPMS which did confuse me lol.
I was always under the impression even from nuero that PPMS is found more likely in the spine.
they are changing the way they think about MS now. Its changing.
It is currently felt that PPMS is largely due to degeneration of the nerve fibres, rather than inflammation, as seen in RRMS, although there is considerable cross over between the two forms. Some neurologists now consider all forms of MS to be on a spectrum, like other conditions like asthma or autism
I have just decided to get on with it, and enjoy what mobility i have. so far its not too bad i can walk very short distances but it leaves me in a lot of pain. I am determined to use my legs a i dont want to loose my legs.
It is a relief though isnt it when we finally get told what it is. I keep thinking i will get a letter saying they have changed their minds lol.
I know it is MS as mine is going along just as one would expect it too.
I hope it is kind to you. xxxxxxx keep fighting. xxxxxx
Hi Jen, lovely to youre still here too. Its 7 years \I think, since I left. But back into MS mode again. What a rollercoaster I`ve been on! xxxxxxxxxxx
Hi Sue, thank you for your reply. TM…yeh, that couldve been my dx too....do people still use dx for diagnosis? c TM can go with Devics disease/NMO…which affects the optic nerve… as well as causing immobility, bladder and bowel disfunction. I feel like a live medical book sometimes. I still google stuff! What does CLADRIBINE do?..slow down progression? I think it`s too late to give me anything. xxx