Hi everyone, I’m new to the group and this is my first post. I was diagnosed with PPMS in 2015 and I also have Fibromyalgia which I was diagnosed with in 2010. I have (had) a number of symptoms since then and before then too. At the moment the most problematic ones are pain, fatigue, walking, coordination, cognitive and sensory problems. Like many of you I suffer and struggle on a daily basis but I try to get through each day the best I can. I don’t have any support network in place and I’ve only just plucked up the courage to join the group. By doing so I’m hoping to be able to offer and share advice and support with people who are in the same situation as myself and maybe make some new friends too. Thank-you for reading. Kind regards Twinkle Toes x
Welcome to the Gang. You are now one of The Special Ones Twinkle Toes. We are all now part of your support network. Any questions, just ask, we may not have a definitive answer but we listen and help when we can.
Keep smiling,
Tippy x
Hi Tippy
Thank-you for your reply and for welcoming me to the ‘Gang’ and quite rightly so we are the special ones… all unique in our own special way.
I have never used a forum before so I’m just trying to find my way round things so please bare with me and once I get the hang of it there are a couple of questions I would like to ask people.
I hope you are keeping as well as you can?
Twinkle Toes x
Twinkle Toes,
One part of the Forum you may like to investigate is Everyday Living, some threads don’t really apply to PPMSers but some of them are relevant to all of us. If you’re feeling down and need a chuckle the Brain Fog is usually completely nuts, they may try and lead you astray but I’m sure you’re strong enough!!
Keep on smiling!
Tippy x
Oi, we don’t lead people astray, they usually manage that all by themselves!
Welcome to the forum Twinkle Toes, all the boards will welcome you, this one for PPers primarily (although sometimes people like me with SP squeeze in through the door). The Newly Diagnosed is where you might find if you have the time and patience, your advice to the newly diagnosed and undiagnosed/worried is welcomed. Basically anyone who has been through the diagnosis and lived with MS can help to support the lost and bewildered. And of course Everyday Living, including Brain Fog. I wouldn’t try to start reading from the beginning as it’s extraordinarily long and confused. But just take as read that we’re all a bit dopey. And don’t believe a word anything our ‘glorious’ ‘leader’ Albrecht Durer tells you. Or buy anything he tries to sell you. Oh and a fondness for gin, and cheese is not necessarily essential, but sometimes one or the other helps.
Sue
Hi Twink,
And welcome to the club that nobody wants to be a member of.
I would just like to point out that the Brain Fog thread is a deeply philosophical and intellectual repository of wisdom and Classified Ads and not, as “Sue” thinks, a dive for the confused and alcoholic.
All cheese related enquiries should be addressed to “Mick”
Yours,
Albrecht (cut price lightbulbs) Durer
Hello Twinkle Toes.
A very warm welcome. This is a great place for sympathy (we all like a bit) empathy (we understand because we are) and support. You can say or ask anything on here without fear of ridicule or patronisation.
I’ve been dogged by the beast for at least thirty years and I’m still kicking it or should I say running my wheelchair into the wall. Oh my poor toes.
The place is full of philosophers, poets and other damn good people.
Steve
Hi Twinkle Toes
Welcome to our gang, which nobody would choose to join, but we are where we are. Lots of lovely people always willing to listen and offer advice when they can.
Any questions please ask, someone will usually have some good advice to offer.
Pam x
Welcome to the mob. Always keep your shield up, to protect against the cold & heartless. Like the world, there is common sense & the clueless. Seems like you’ve had a rough few years & built up the courage to post & share. Well done. Don’t share too much info. The internet attracts trolls. Stay awesome, aware & awake. Terry
Hello twinkle toes , im Michelle and I have a wonderful assistance dog called Frazer . I’m a wheelchair user but still have some mobility left in my home. I’m still awaiting a diagnosis and have found this group a life line . I’m sure it will help you too. Michelle and Frazer xx
Hi twinkle toes, I was diagnosed with progressive MS in June 2016, welcome to the forum. I have gained a lot of information from this group and entertainment with quite a few smiles from the Brain Fog thread! Sue x
Hi Twinkle toes,
Welcome to our little band, lots of lovely kind and helpful souls!
Take Care,
Nina x
Morning Tippy, Thank-you, I have had a quick look on there and there’s plenty of different types of threads going on which are interesting. I also had a look at the Brain Fog one and I had quite a chuckle at some of the posts, my kind of humour. My apologies for taking so long to reply but I’ve had one or two difficulties with trying to get going on the site. Hope you’re well? Twinkle Toes x
Hi Nina, Thank-you for you welcoming message. My apologies for the late response but I’ve been experiencing a technical glitch but hopefully it’s sorted out now. I have been reading many of the posts/threads on the site and yes, it would appear that there are a lot of lovely genuine people on here. Twinkle Toes x
Hi Sue,
Thank-you for your message welcoming me to the forum.
I see that you were diagnosed in 2016, I was in 2015 and I still haven’t got my head round it but reading some of the posts on here I’m not sure that I ever will but I will try to get through it on a daily basis the best I can (like we all do).
There are lots of interesting and informative posts to read on here and yes, the Brain Fog thread does make me chuckle. I’m looking forward to now being part of it all.
Hope you’re keeping well?
Twinkle Toes x
Hi Michelle (& Frazer),
Thank-you for your message it was lovely to hear from you.
I’m still mobile myself too but with the use of a walking stick (& furniture) around my home and when outside I use my stick or (and) a mobility scooter.
I was diagnosed in 2015 but it would appear that I have had it for a number of years prior to this and I suppose this explains a lot but still doesn’t help. If you don’t mind me asking but howcome you haven’t been diagnosed as yet? Obviously I understand if you’d rather not share this.
I’m hoping that by joining the group that this will help me with much needed support and information (and maybe even make some new friends) as I don’t have a support network at the moment.
Twinkle Toes x
Hi Pam,
Thank-you for your message welcoming me to the gang.
Yes, it’s not the best gang to be in but alas we are and unfortunately there’s nothing we can do but make the most of things the best we can and tbh from the posts, information and advice that you’ve all been sharing you all sound like lovely, friendly people and I’m looking forward to becoming part of it.
Twinkle Toes x
Hi Terry,
Thank-you for your message welcoming me to the ‘mob’.
The shield is on standby as alas the cold & heartless get everywhere just like an annoying itch. The common sense is high up there but then comes along the clueless in a moment of madness… oh to be normal whatever normal is.
Yes, I’ve had a rough few years probably like many others on here but I’m not about to give up which is why I finally built up the courage to join the group. So yes, well done me, thank-you.
Also, thank-you for the warning about the internet trolls, just like the annoying itch they get everywhere.
I will stay awesome (as that’s easy) and I will stay aware but as for awake I can’t promise that as my fatigue is chronic.
Hope you’re keeping well?
Twinkle Toes x
Hi Steve,
Thank-you for your message and welcoming me to the group.
Sorry about the delay in getting back to you but I had a couple of technical glitches that have now thankfully been sorted out. It still confirms that me and technology don’t gel but mix in my cognitive issues and it becomes a total standoff.
You’re right that we could all do with a bit of sympathy and empathy at times and say things without ridicule or being patronized and I think that this group is where to find it as we’re all in the same boat, so to speak.
I was a bit surprised to read that you’ve been dogged by MS for about 30 years and I’m sorry to hear it but you’ve proved that we can all get through things but I would imagine you’ve worn out many wheels on your wheelchair proving this.
It’s took me a long while to pluck up the courage to join the group and believe you me I could of done with it sooner but circumstances wouldn’t allow it but I’m here now.
Hope you’re keeping well?
Twinkle Toes x
Hi Albrecht,
Thank-you for your message welcoming me to the ‘club’ that nobody wants to be a member of but alas unfortunately we are but that makes us all special and unique in our own way.
I have had a look through some of the posts/threads and have found them different and interesting. I have also had a look at the Brain Fog one (which I believe you started) and have found myself having a good chuckle at it, my kind of humour.
I have made a note that if I need alcohol (especially Gin) it’s ‘Ssssue’ I should contact and a reliable source also mentioned that if I favoured Cheese it was ‘Ssssue’ (again) or ‘Mick’ who could help with this but if I needed to buy anything like light bulbs etc then that’s your department… apparently.
Hope you’re keeping well?
Twinkle Toes x