I was diagnosed with MS in February 2000 and confirmed as PPMS later that year.
Getting the diagnosis was a big enough shock but being told it was PPMS was devastating !
I was only 39 !
Mt husband and I had so many plans for once the children had grown up (they were 16, 14 and 13 at that time !) but, sadly, we will not “do the Penine Walk” or visit the Lake District.
During my, nearly 12 years, or this illness I have become more and more reliant on my wonderful husband ! I would be useless without his total love and support !
I don’t see a neurologist or MS nurse anymore as I don’t see the point. I’m not on any medication either.
I usually look in on Everyday Living but, like others, I think I shall be looking here in future.
People who don’t have PPMS just don’t seem to get it !
We are a very select club one you would not really want to join BUT welcome! Some of us waffle alot and ramble. The best Progressive MS moan got lost some where but it was VERY popular. What we do best is make this disease not so lonely.
Filtered I’m surprised at you, we never use bad language… I think bad words all the time about this disease, I had assumed you ‘motley crew’ can read my mind!! A special hi to Pamela this is the place if you want some encouragement, my ‘posts’ can be a bit rambling and light hearted BUT deep down we all know just how much this disease sucks! Now that’s how you get around the filtering because everyone knows what I mean, but I would never use the ‘f’ word Hope you all have a good weekend, take care M
Hi Pamela and Seb, great to have you along in our elite little club!
I’m 58 and was dx ppms in April 2008. Not on any drugs. Pretty rotten fatigue and walking ain’t up to much… but hey I whiz round on my mobility scooter.
It’s like every day I realise that something else has changed. Today I’m trying to wrap xmas presents. I used to be able to wrap xmas presents. What happened??? I’m really struggling to wrap small boxes of shortbread!!! HA!
Welcome to you both. It can seem lonely but remember there’s a bunch of us here who are going through the same sh… (I may was well just type in [filtered word] myself!) and you can come on here and realise you are not really alone at all.
I was dx with ppms in july 2008, went down hill realy fast in 2009 but seem to be holding my own at the moment.
Taking lots of medication for pain, but apart from that I refuse to let this blasterd thing get me. Still walking ever so slowly with a stick, wheelchair still under the stairs gathering cobwebs. Love to cook, do paper craft, play with my grandkids.
I try to think about what I can do not what I can’t, and like PatB having trouble rapping Xmas presents, my daughter volunteered to help all we did was laugh at the mess I made but hey! there rapped aren’t they?
So I try to see the best in a disease I did not want or ask for, it doesn’t allways help but It’s what keeps me going.
Welcome to “our gang” and also hello to everyone else.
I have had ppms for many years now, and am one of the unusual people who was diagnosed at 29, whereas they tell me you dont usually get this until in your forties, trust me to be different!
Anyway, I have used a powerchair for over 15 years now but still enjoy things. It is a different life to what I had mapped out, but still ok(ish).
Decided many moons ago it was pointless to keep seeing the neuro annually to be told sorry there is nothing I can offer, so only bother with my gp since then, but he is lovely to me, so I am really lucky.
Hi Pamela, NO is the big answer to your question. In terms of PPMS I find it pretty useless. I am on benefits as cannot work and to be perfectly honest with you I go to see the neuro so that I havecopies of letters to send to benefits when reapplying. Also the forms always ask you if you are seeing a specialist so I suppose it’s good to put that you are.
Also you never know something will come along at some time in the future and being on a neuro’s list might put you in the queue for the new drug, treatment, whatever.
So there’s two perfectly practical reasons for going. But to be frank, if I was financially independent and didn’t have to worry about benefits, I wouldn’t bother.