Last reply 4 months ago
Age at Diagnosis

Good morning from the beautiful state of Kansas, USA! I’m wondering about disease course when diagnosed at an older age. I’ll be 50 in June & was just diagnosed this year with RRMS. I’ve read that being diagnosed after 40 is often PPMS and/or can have faster progression. Anyone else here diagnosed after 40 care to share their experience?

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rivka
4 months ago

@rmdaniels, I was diagnosed four years ago, at age 55, RRMS. In these four years, symptoms have definately gotten slowly worse, but no new lesions, and my neurologist still calls it RRMS. Happy to answer any more specific questions if you have them.


laurianne25
4 months ago

I was just diagnosed in February and turned 49 in March. I’m not sure what type I have yet.
@rmdaniels


rmdaniels
4 months ago

@rivka. @laurianne25
Thank you for sharing your experiences! Im fascinated with how different everyone’s symptoms can be. What have been your primary symptoms? I’ve had terrible hip pain & numbness in my left leg, bladder issues, fatigue, blurry vision a few times & choking on food.


rmdaniels
4 months ago

…oh, and when I get the slightest bit overheated I feel like I’m going to absolutely die. 😣


grandma
4 months ago

Hi all of [email protected] rmdaniels @ laurianne25 and @ rivka don’t forget you are born with ms, it takes a ‘major trauma’ to your body to set it in motion hence the 60/40 split with women/ men cos men don’t menstruate or get pregnant. One can be diagnosed at a very young age these days but because things have moved on medically one can get DMT’s early on so one can hope that they start working straightaway. If one is not disgnosed until later in life, one can always be grateful that the beast hasn’t affected you unduly for a long time, but as a rule, people who are diagnosed later in life often have eureka moments about strange things that happened from childhood onwards, your hand not working properly for a day or two, undiagnosed tripping up, being put down as a clumsy child etc., so there are some things to be grateful forπŸ‘πŸ˜œ


rmdaniels
4 months ago

@grandma.
That’s fascinating! Thinking back over the years, I’ve never had a lot of stamina and I have a sister with lupus. I agree that there are always reasons to be thankful! I’ll keep my mind on those thongs today! I hope you have a great day as well!!! πŸ˜€πŸ˜€πŸ˜€πŸŒžπŸŒžπŸŒž


rmdaniels
4 months ago

Oops, things, not thongs! πŸ˜‚πŸ˜‚πŸ˜‚
I’ll have a bad day if I think about thongs today!


highlander
4 months ago

@grandma
I might be male but I’ve had bombs, bullets, scud missiles, abuse, a few fights,car crashes, women, men and children to contend with!!
So I guess I fit in the major trauma category quite nicelyπŸ˜ƒ
@rmdaniels
Dx as spms 2018 age 49
Right leg no longer works.
Numb from the head down everywhere and I do mean everywhere!
I have tinnitus in my right ear to much fun with guns!
Have a memory like a goldfish.
Need to sleep all the time then can’t sleep when I want to how bad is that😠
But time and tide wait for no man!
Or the taxman…bank….council..need I go on??
Oh yeah and this MS malarkey!!
Such funπŸ˜‚
God I’m depressed!!!πŸ˜‚
I do try and keep a sense of humour honest😊


potter
4 months ago

I also live in the beautiful state of Kansas and I was diagnosed at the age of 55. I had sporadic symptoms since I was in my twenties. I am 66 now and still RRMS, I started on a DMT as soon as I was diagnosed. I live in Wichita, we could meet up sometime or you could PM me. Potter


rogersouthall
4 months ago

rmdaniels, I was 56 living in the States and running a business, each and every sufferer has different things that seem to get them, flushes, numbness and I suppose sites like this allows us all to learn, http://www.wholesorts.com is my monthly blog, firstly to try and inform people what MS is and how it changes a suffers life and secondly a place for me to express how I am feeling and how I approach life, MS lives with me.
I wish you well and I am always here, my details are listed on the blog, good luck


rmdaniels
4 months ago

@highlander
You are an absolute hoot! Sounds like you have legendary experience at being a survivor!!! How long did u have symptoms prior to DX? It sounds like super fast progression. Did u start out with RRMS?


rmdaniels
4 months ago

@potter
I’m enjoying this beautiful state for work & will be heading home tomorrow. I’d love to chat though! I’ve sent a friend request & will send my ph# via PM. I’m looking forward to talking!


rmdaniels
4 months ago

@rogersouthall
I love reading your blog! I really love your positive & humorous approach to the pitfalls of “the beast” as @grandma says! Thank you for being such an encouragement to so many of us!


iris
4 months ago

rmdaniels; Diagnosed with Secondary Progressive at 63. Had major event in 2003. Took me 5 years to change a light bulb and 6 months of sitting in the garden feeling i was on Beachy Head [famous cliff] Lost 8 pounds in one week, couldn’t eat! Kept me ever weight concious since. Difficult! Developed a few pains . 2015 mri confirmed. Neurologist said “probably” won’t ever have major event just slow deterioration. Now 2 arm crutches and Husband pushes me in wheelchair for greater distances. Can get about the house. Loo every hour but manage with prior knowledge regarding places holidays etc. 1/8th glass of wine otherwise dead! Small “do” 2 months ago after infection, brexit discusion and returning to Argentine Tango too soon.Again can’t eat, sick massive pins and needle and almost passing out several times. Ambulance, cardiac test. fine . Lost another 4 pounds! better after 1 week. Every cloud . Get to know you, the individual here. given up Argentine [ jive 3 years ago.] Me.. must take more care by being much more impact aware. Pleasure in other stuff. Each to his own. Good luck.


rmdaniels
4 months ago

@iris
Sounds like it’s been a rough road. Thank you for sharing these things with me. They’re sacred. I hope things are more settled with the passing out. That’s scary. I pass out when I’m sick, and it feels like what I imagine death to be like. Sorry, that was morbid. I wish you peace & things to enjoy today! 🌞

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