I dont drop by as often as I should but I do think about all you guys but life is enough to cope with and I know that you all know what I mean,
Chin up, life sucks take care, M
Hi I always have a read of the posts on here, but don’t always post anything. I’ve just come back from my weekly dose of hyperbaric oxygen therapy, at my local MS Therapy centre. I started going last April and I haven’t had a UTI since I started. I was getting one every month before that… I’ve been reading about that new drug they’ve just released which is for RRMS it’s called Fingolimol or something like that. As they haven’t found any treatment for us yet I’ll stick with the HBOT. Hope everyone has a happy and ‘healthy’ new year.
Lynne xx
Hi Lynne
I think (yes I do BUT not often) we are the treatment for Progressive M S with no side affects… We are the required tonic for this s**t disease, sorry shouldn’t use bad language but sometimes it’s what fits.I’m starting to worry that I may be addicted to smiley’sTake care and a very Happy 2012, M
I. like many others I am sure, am having a lot of trouble understanding the working of this new site.
I keep asking where to get help, but have had no replies.
I can post a query and post a repky to the original post, but am unable to understand how to reply to following replies. I notice that where people have replied they seem to get repeated later down the page so you can’t see wood for trees.
The letters are too small so I have difficulty reading the posts, if I try making adjustments to my ‘page’ that doesn’t make things any better, in fact it appears to make things even more confusing.
COULD THESE REASONS BY WHY PEOPLE ARE NOT USING THE SITE AS MUCH NOW???
Hi
Ref - ‘how to reply to the following posts’ I usually just tag things on to the original post, does that make any sense? My other thoughts are life and MS suck in equal measure AND you are difinately looking in the right place!!
Hoppity just a thought why not ask Bob Barbour at the start ‘announcements’ maybe he can help with your problem! When its a particularly long post/site skip to the bottom - that way you don’t have to read all the previous posts, unless some of them are sooooooooooooo witty…
Take care, M
Habit forming? I think (still?), we don’t chat much but I seem to have fallen into the habit of checking this site out dailyIt saves me from talking to myself, I think! Should I try and get a life?
take care, have a good weekend M
Hi Crazy
I think (yes I really really do) that we are all a bit crazy, I almost wrote Hobit forming, it does help. I also think (sorry if I continue to persist in saying ‘I think’, I protest too much). Now I’ve forgotten what I was going to say …
Have a good day and take care, M Oh! that was it I’m adictated to !!! smiley
Hi all
I am only an occasional user as not yet diagnosed, but convinced of PPMS, although within that I tend to have a mega wave of symptoms, like a relapse, once or twice a year, on top of the daily ‘shutdown’ of physical and mental functioning.
I have found the change in this site hard to adapt to, so stayed away for a while, but am gradually coming round to the change.
Now that I am getting used to the new format I hope to regularly sign in.
Kind regards
Dianne x
Hi Dianne
Not a club you really want to join BUT we are a daft/mad bunch so a BIG welcome.
Take care, M
I have not rambled for a quile - Oh! not again, waffle then… The sun is shinning and I feel happy so I thought I would pass it on Take care have a good weekend, M
Hi folks
I have forgotten to ramble for a while… A bit fed-up, I slide off my rowing machine - at least I didn’t have far to go to the floor, completely disorientated me. Scary, no matter how hard you try MS will bite you! Have I given up NOT likely BUT I am now extra careful, don’t say I should have been.BUT, don’t say butt it’s still a bit tender as too are my bruises Never say dietake care, have a good weekend, M
Pat x
Hi
Cushions all around gently does it take care, M
Hi M
i wish I could use my rowing machine, I used to enjoy a bit of rowing while I listened to a good, loud rock song.
I use a vibrator gym now, but I don’t get the same buzz, haha excuse the pun.
Doesn’t exercise make you feel good, knackered but I feel that I’ve achieved some thing.
I don’t post much on here but I like to read what everyone else writes, I’ve found some of it really helpful.
Lynne xx
Hi Guys,
I need some help please. Up until xmas I was having real problems walking and was confined to my wheelchair when out and about. I had given up on driving as I only have a normal car.
My neuro wante to get me into Hospital b4 xmas to do some tests but could not get a bed so he arranged for an mri late on the 21st of Dec which showed up some lesions on my spine(not there earlier in the year).
He made an appointment the same day for intro steroids, and the next and xmas eve. It had an immediate effect and I am now able to get around the house and drive again.
This begs the question, which category do I now fit into, as b4, my file said I was PPMS but if not then would I qualify for drug treatment. Is this good result from steroids any indication I may not be PPMS?
Any ideas?
Tony
Dear Tony,
What a time you have had BUT intro steriods have helped you. Any ideas? Damned good questionIf I have understood anything from my Progressive MS, its if it appears to work can we work on the premise that it is working or helping I have no medical qualifications, I think sometimes we’d do anything for a little relief WE have to trust our medical team. Take care, M
Hi Lynne
I need to ‘do’ something and I’m not giving up on my rowing, maybe more cushions? I had a ‘shot’ on a swing (play park) it was glorious and liberatating - I was peeped at by a passing van driver at least the park keeper didn’t chase me. No children were deprived it was FAR too cold. Am I mad or daft? Be kind, take care, M
Haha M yes it doesn’t hurt to be daft sometimes ! I take my granddaughter ( with my hubby) to ‘messy play’ at a local community centre and the kids there love my scooter. It’s more the little boys, they’re all under 5 yrs old but they want to climb all over it, so I spend most of my time there giving these kids rides on my scooter ( with their mothers’ consent). I have a laugh doing it and I think it helps these kids (and mams) realise that just because we are disabled and use a scooter don’t mean we are all miserable all of the time. I have my miserable days but I don’t go out then. I sit and watch TV and eat chocolate. Keep strong.
Lynne xx
One of the joys of a scooter is watching the reaction of young children to it. Eyes like saucers and oh the envy on their faces.
I let my grandson (then aged 5) have a go on mine… in a disused car park… I don’t think I’ve ever seen him so excited and pleased with himself!
I’m grounded at the moment as scooter is broken. Being fixed on Friday. Even though I’m not well enough to go out today I still feel a slight panic at not having my scooter.
Pat x