For those who have had MS for 15 years or longer

[kmallory1]

Onset 16 years ago, diagnosed in 2003
Powerchair all the time, recently the big rehab tilting reclining type
Progressed from cane in 2004, to scooter in 2008
SPMS, I almost missed the RRMS part. Relapses were subtle and short.
SSDI and LTD since 2008. I will be 66 this year, so LTD will end.

[rdmc]

• How long since your MS onset (not diagnosis, but onset)? 20 years
• Do you use a mobility device? Regularly? Occasionally? What do you use? At home I use a cane, a rollator, or nothing at all, depends on how my mobility is that day. Outside home, I always use a mobility device. Granted 99 percent of my social calendar seems to be doctor's offices so I ussually a cane, but for longer distance outings, I use a wheelchair.
• Do you still have RRMS or has your dx been changed to SPMS? Changed to SPMS about 3 years ago. Stopped DMD.
• Are you employed, or on SSDI? When did you go on SSDI? Employed full time, but I work from home on a laptop all day. If I had to go to a workplace, I could not work.

[hunterd]

I was officially diagnosed in December 2001, I believe that I have had MS since my mid-20s.
I use an electric wheelchair 24/7.
I was initially diagnosed RRMS, but my neurologist sat down with me and after talking about things changed my diagnosis to PPMS.
I worked until December 31 of 2009 and I immediately applied for SSDI.

[pennstater]

I know I have been lucky:

• Onset 1993, diagnosed 2006
• No mobility device, but may start with walking stick for longer walks or when wiped out.
• RRMS, but I wonder now. It could be Tysabri is doing its job. I am slowly progressing, but not willing to take chance and go off Ty.
• On disability beginning 2014, cognitive, arm pain & weakness, and fatigue forced me out.

Look forward to reading more responses. Thanks for starting.

[BJG55]

My 15+ years with MS

I've had MS since 1992.

I usually use a walker. I have a wheelchair for longer distances or when I have to be on my feet for more than 1/2 hour.

I transitioned to SMPS in 2007-2008

I am currently still employed, but I'm in the process of going off on Long Term Disability;however, I am also 60 years old, so being older doesn't help the equation.

[Seasha]

Hi Faith~

• My onset was 27 years ago- 1989

• I always use a mobility device (walker) and for long distances a wheelchair

• SPMS 2009 - 20 years from onset

• Went on SSDI 2009 & now regular SS due to age

I wasn't officially dx until 10 years after first onset. I often wondered if I was treated sooner, how I'd be today? I don't beat my head with wondering anymore.. It is what it is.
And bear in mind, it's so individual for all of us!

[kmathis]

geez...has it really been THAT LONG!

- DX 1997 - about 18 years
- cane sometimes when in a flare
- RRMS since dx
- work full time/predominantly sedentary job

[Mamabug]

I'm curious. I'm between 14 and 15 years since MS onset. I've been reading that, at 15 years, 50-70% of people with MS are using a cane or other mobility device.

• How long since your MS onset (not diagnosis, but onset)?
• Do you use a mobility device? Regularly? Occasionally? What do you use?
• Do you still have RRMS or has your dx been changed to SPMS?
• Are you employed, or on SSDI? When did you go on SSDI?

Here are my answers:

• January 2002, a little over 14 years
• Not usually; occasionally, when I'm in a flare
• RRMS
• Went on SSDI in 2008, 6 years after the onset of MS