loulou
4 years ago
PPMS LIST ANY NEWBIES ???

Loulou Good news If we are very very lucky we MAY be having our own forum on Shift soon
markms lets keep our fingers crossed !
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woops that wording seemed to do its own thing !!!
If any new PPMS’rs would like to be added to the list please do let me know
hope you are having a good day, albeit a jolly cold one !!! Loulou xxx

Hi Lou, still on PPMS trial in Liverpool. The new group sounds great. Hope all is well, Nick

Hi… I’m fairly certain I need to be added to the list ~ Still need a lumbar puncture and to see a MS specialist to confirm etc but neuro suspects PPMS going by my symptoms, walking, scans etc…

The group sounds really good 🙂

xxx

Loulou
markms
paulecock
lord daresbury (nick)
admin
gcfc40
blankreg
sparticus
maggie
wheelygirl
arlene
tonyb
lloyd
AlanB
glynjamin
rollinglikeaboss
globetrotter
Skippy
lorag
msue62
jeff210
chris75
splick
Catman
dave-luton
cazzzzzy welcome!

@loulou, you may want to remove ADMIN from your list. That username no longer exists.
🙂

Thanks Loulou 🙂 xxx

Loulou
markms
paulecock
lord daresbury (nick)
gcfc40
blankreg
sparticus
maggie
wheelygirl
arlene
tonyb
lloyd
AlanB
glynjamin
rollinglikeaboss
globetrotter
Skippy
lorag
msue62
jeff210
chris75
splick
Catman
dave-luton

Loulou
markms
paulecock
lord daresbury (nick)
admin
gcfc40
blankreg
sparticus
maggie
wheelygirl
arlene
tonyb
lloyd
AlanB
glynjamin
rollinglikeaboss
globetrotter
Skippy
lorag
msue62
jeff210
chris75
splick
Catman
dave-luton
cazzzzzy

cazzzzzy back on the list
admin removed !!!

sorry to all you PPMS’rs a boring post for you guys but a very helpful one for our little PP group x

the army is growing lol go loulou

Ha ! I meant sorry to the RR’s not the PP’s, think brain fog is definitely setting in !!!
Morning Mark ! How you doing? tis a job to keep track of who’s still on Shift on the list and keeping it correct
am doing my best ! I really wish our little group could meet up but I know that would be impossible!
It can feel lonely having PP, I just want everyone to have an easy reference
Oh damn just looked out the window and snow is falling thick and fast OH NO !!!!

Hi everyone …just wondering if you get a formal diagnosis of Primary Progressive MS or if you just get diagnosed with MS?

My latest letter says “Multiple Sclerosis – Progressive” although in 2010 when diagnosed they said it was difficult to say if it was PP or RR.

@outlier, all MS variants can be progressive, but it’s whether you have defined periods of remission and episodes of relapses.
It is important to determine whether you are Progressive or Relapsing/Remitting, due to the available treatments, which seem to be targeted only at the Relapsing/Remitting type at the present time.

Thanks Stumble, I guess I cant be added to the PPMS list just yet. 🙂

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