For those who have had MS for 15 years or longer

[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

[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

[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!

[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.

[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.

[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.

[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.

[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.

[AriD]

Diagnosed 1995
Currently not using any device but everyone around me says I'm unsafe and need at minimum a rollator. Fall a lot. Have had long periods of not being ambulatory or using walker with relapses
My last neurologist changed me to SPMS but my new one says she's not sure and wants me on a DMD so RRMS
Trying very hard to keep working but know the end is in site. So sad

[1936siols]

Hi

I was diagnosed in 1966. I used 1 cane in 1966. In 1967 had to switch to 2canes. In a few years had to use a walker and now use a wheelchair.

Lois

[marti]

I was dx in 2001 after about 15 years of symptoms. Some went back to childhood.

I do not use any devices regularly. I keep a walker around just in case.

I was moved from RRMS to SPMS about a year ago

Went on disability in 2002. Gave up my job of 16 years and went to a different department. Changed my hours and responsibilities and over the years worked less and less hours. Two years ago I was down to working about an hour or hour and a half a day so I just retired.

[KatieAgain]

Time sure goes by fast.

- Onset and Dx in 1999.
- I was regularly using a rollater and walking stick daily until TY ( Oct 2013). Since my walking has improved significantly, I still limp with foot drag. I have to pull out the mobility aids when I am tired or flaring. If I go off TY, I will most likely rebound. If I go to the mall or zoo something like that I have to use a Mobility Aid or I will fall.
- RRMS...no sign of changing.
- Was retired in 2008 and have 100% VA Disability. Too many flares and complications to be gainfully employed.

[kim-mastro]

It's been a LONG time

1. Diagnosed in 1978 (38 years)
2. Walking on my own but have a cane for lots of walking (bad back)
3. RRMS
4. Still employed (18 years as a public school classroom teacher - last 14 in Middle School) but probably retiring in June. Actually, I've been teaching for close to 30 years all together.
I still have some numbness in my hands but now my Neuro says it's probably carpal tunnel not MS!

[marol]

life long MS

Dx-1976 onset in'75 months after HS graduation
went on SSDI after dx
married in '77 raised 2 children
Worked at home (husband's business did all work but labor)
suffered much small flare ups but kept going
It wasn't until '1989 I started to use a cane dx with SPMS
Still driving got my 1st scooter in '93
In '98 in a pwr. chair all day
Sure life is challenging but as before I just keep going

[Carolinemf]

Hi, Its 29 years since my onset and for me personally the biggest contributing factors have been hormonal changes to do with periods and pregnancies and then fibroids and ultimately a hysterectomy . I took low dose birth control pills and controlled my periods trifasicely for about 9 years this enabled me to have a period only every 8-12weeks. Although i originally began doing this because of problematic periods etc i also found that my ms was the most stable while i was doing this. because it was so beneficial i continued to take the pills to regulate my hormones even after i had a hysterectomy.at about the 15 year mark i was on beta blockers and other meds but the side effects of these only made me feel worse so after 3 years i discontinued. i use no aids and only have to deal with relatively minor relapses even though my initial onset was quite severe and frightening. i am now entering menopause and so far things aren't bad - but that could be the tysabri.