Hello, i was diagnosed with MS in 1999 (before lots of you were born). i was told it was Benign MS and after years told there was no such thing as Benign MS and it was Relapsing Remitting.
I am now 65 and walk with a stick and often walk as though i am drunk.
My husband has Parkinson’s Disease.
i cope somehow or other!
MS is a difficult illness and i think it really helps to communicate with others.
if you feel like a chat, please drop me a line.
Simone
2 Likes
1999 was a vintage year for both of us. Mine didn’t look benign from any angle then, so it was straight on to the Avonex for 10 years and now Tysabri for 10 years and counting. I understand that some people do turn out to have had ‘benign MS’, it’s just that it cannot be reliably predicted and can really only be properly dx post-mortem, by which time the matter is of purely academic interest…!
I am very sorry to hear that you and your husband have such a troubling selection of chronic progressive conditions to deal with. That must be really tough.
I’m glad you’re here - welcome.
Alison
1 Like
Hi Simone,
I hope you are both as well as can be. Sorry to hear that you both have nasty health issues, this must be very tough, although you will both have an understanding of a chronic illness. If my wife got ill I have absolutely no idea how I’d cope.
Wishing you all the best.
Mick
Hi Alison
Thanks for your quick reply.
How are you now? How is your MS?
Where about are you based?
Do you know if these posts are public?
Kind regards
Simone
1 Like
Hi Mick - thanks for replying.
How are you doing? How long have you had MS?
best wishes
Simone
Hi Simone
I am pretty good thanks and have been very lucky. I was diagnosed RRMS age 29 in 1991 then SPMS in 2007. Walking like a drunk is very annoying, and people wonder why I dont drink a lot. (as my balance is bad enough without alcohol) We lived in Sussex until 2019 when we moved close to the New Forest, just in Dorset. Here I have fallen in love with the variety of vivid garden birds that I had only ever seen in books before. What sort of things put a smile on your face?
Mick
Hello Simone
I’ve never thought that ‘benign’ MS was a genuine diagnosis. Being given that label ruled you out of disease modifying drugs once they became available in 2002. Very unfair.
I’ve had MS since 1997, mine was always RR though. Which meant I did qualify for DMDs in 2002. Although they did me no good as my body just hated them.
You and your husband have been so unlucky, with Parkinson’s as well as MS, it just seems wrong.
To answer your question to Alison, yes, these posts are public. That’s why we tend not to divulge particularly personal information. Apart that is, from information about MS. If you wanted to send a private message to another member, look at the spot next to your username at the top of this page and hit that. You then have 4 tags at the top. The alarm image is where you’ll see replies, ‘likes’ and posts where someone has used your @name. The ‘bookmark’ image shows where you’ve marked a thread (I haven’t used this one!). The envelope image is where you’ll find private messages. The next ‘person’ icon is for personal information.
Sue
Hi Simone
You’re not much older than me!! I’ll be 70 at the end of next month. I’m PPMS and was diagnosed almost 4 years ago. I can still walk over a mile without sticks but find it easier with them if the ground is uneven. Other than a slightly weak left leg I have no real symptoms.
Keep smiling and keep posting - us oldies can still have a ball!
2 Likes
They are public, yes. There is a private messaging facility for sending private messages, but posts on the main boards can be seen by anyone.
Thanks to everyone that replied to me - do you know simple things like reading your messages have made me feel so happy. I will sleep well tonight!
I must just tell you something else about me - my late mother (she passed aged 79 in 2012) had MS - from when she was 52. She had Primary Progressive and had no relapses. I thought i knew everything about MS but did not - everyone is very different.
1 Like
i think i like simple things like flowers that have a great aroma or even a good book that i can lose myself in.
Big plus i have three children and seven grandchildren!
I believe mine started 1998 when i had odd things going on then 2000 went blind on holiday and the rest is history. it took until 2016 to be diagnosed with Progressive MS.
That was kicker as my mum had died just a few weeks before.
MS is a challenging illness and painful. Painful emotionally and physically.
we are snowflakes. everyone is different.
Anyway your still a young un i am 70 end of this month beginning of next a MIGHTY LEO lol…
My grandad had Parkinsons, and my dad had lupus alongside some other weird diseases. but on my mums side was longevity.
Its nice to meet you we should start our own club lol. THE SILVER MSERS.
xxxxxxx
1 Like
Blimey I bet birthdays and Christmas are riotous times!
That’s a good idea!
Do I count? I have grey stripes either side of my head. A kind person might call them widows peaks or even ‘Mallen’ streaks (Catherine Cookson style). A more honest one might say they’re badger stripes!
I’m 54, a tad younger but I’m sure I count. Don’t I?
Sue
1 Like