For those who have had MS for 15 years or longer

[jane_eyre]

[*]How long since your MS onset (not diagnosis, but onset)? -- 1989, onset, so 27 years? [*]Do you use a mobility device? Regularly? Occasionally? What do you use?
cane in house, occ. outside, walker occ. outside, scooter outside mostly...mostly don't go outside.
[*]Do you still have RRMS or has your dx been changed to SPMS?
down or upgraded to SPMS in the late 1990s, early 2000s? forget. different neuro now.
[*]Are you employed, or on SSDI? When did you go on SSDI? [/LIST]. stopped working in 96-98 -- tremor affected typing skills...bad reaction to iv cipro in 96 and meds to counter reaction made a moderate tremor a grand one, left side...and one job i had required physical labor, so it became dangerous. find not working xtremely depressing. but i'm old enough to retire by now anyhow. imagine most retirees who loved working feel depressed about that too. got SS Disability in 1998. Eleven years after onset.

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

[/QUOTE]

[agate]

[*]How long since your MS onset (not diagnosis, but onset)? -- 1989, onset, so 27 years? [*]Do you use a mobility device? Regularly? Occasionally? What do you use?
cane in house, occ. outside, walker occ. outside, scooter outside mostly...mostly don't go outside. [*]Do you still have RRMS or has your dx been changed to SPMS?
down or upgraded to SPMS in the late 1990s, early 2000s? forget. different neuro now.[*]Are you employed, or on SSDI? When did you go on SSDI? [/LIST]
. stopped working in 96-98 -- tremor affected typing skills...bad reaction to iv cipro in 96 and meds to counter reaction made a moderate tremor a grand one, left side...and one job i had required physical labor, so it became dangerous. find not working xtremely depressing. but i'm old enough to retire by now anyhow. imagine most retirees who loved working feel depressed about that too. got SS Disability in 1998. Eleven years after onset.

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

[/QUOTE]

jane_eyre, I notice that this is your first post. Welcome! I've been on this board for many years though I haven't been very active lately. Jane Eyre is one of my favorite fictional characters.

[90stangg]

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

March 1990 16 years
Fore arm crutches and a scooter
changed to SPMS
Retired from Ford Motor in2008

[REG53]

I had my first sx in the late 1970's. I was tested for years but couldn't find anything wrong. I was diagnosed in 2004, I was already in a brace for drop foot. I now use a cane, walker and scooter.

[holliedog]

I was diagnosed in 1998 at the age of 25, but I think I had undiagnosed symptoms when I was in high school. I too was told at the time of diagnosis I could expect to be in a wheelchair in about 10 years.

I currently do do not use any assistive devices. Haha to the neuro that told me I would be using them by now.

I still have RRMS.

I am am currently employed full time, working as a registered nurse.

[Sharebeaer]

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

--- Hi Faith
I can trace my symptoms back to my teen years. I was officially diagnosed April 2001I now use a wheel chair when I am out of my home.
In my home I wall walk using furniture etc for balance. I limit stair usage.
I was R /R from 2000 - 2006. I have been SPMS since

I worked for a couple years but then I went on CPP disability here in Canada. I am no longer on CPP disability as I do a little office work for my husband every week.

[Mamabug]

--- Hi Faith
I can trace my symptoms back to my teen years. I was officially diagnosed April 2001I now use a wheel chair when I am out of my home.
In my home I wall walk using furniture etc for balance. I limit stair usage.
I was R /R from 2000 - 2006. I have been SPMS since
I worked for a couple years but then I went on CPP disability here in Canada. I am no longer on CPP disability as I do a little office work for my husband every week.

I'm a Canadian too -- dual citizen, actually. I live in Kansas. I assume that I don't qualify for CPP in Canada, because I only worked there for a few years, prior to marrying a US citizen and moving here.

[GOFOXGO]

Kansas

I'm a Canadian too -- dual citizen, actually. I live in Kansas. I assume that I don't qualify for CPP in Canada, because I only worked there for a few years, prior to marrying a US citizen and moving here.

Hi Mamabug!

I'm in KS too. I know you see Dr. Lynch and drive from Wichita to see her. It never clicked for me until you made the dual citizen comment. Sheeshk I've been a member since 2008.

Hopefully, you are enjoying this cool down in our weather!

Happy 4th of July!

Teri

[Mamabug]

Hi Mamabug!

I'm in KS too. I know you see Dr. Lynch and drive from Wichita to see her. It never clicked for me until you made the dual citizen comment. Sheeshk I've been a member since 2008.

Hopefully, you are enjoying this cool down in our weather!

Happy 4th of July!

Teri

Thanks. Yes; not actually IN Wichita. I used to see a neuro there; I'm about 30 miles from Wichita. My next appointment with Dr. Lynch is coming up this month.

Looking forward to the fireworks this evening. We also saw a fireworks show on Friday evening, which happened to be July 1, Canada Day. In my head, I celebrated Canada Day by singing "O Canada". Tonight, I'll celebrate Independence Day. As a dual citizen, I guess I can do both. :-)

[GOFOXGO]

Thanks. Yes; not actually IN Wichita. I used to see a neuro there; I'm about 30 miles from Wichita. My next appointment with Dr. Lynch is coming up this month.

Looking forward to the fireworks this evening. We also saw a fireworks show on Friday evening, which happened to be July 1, Canada Day. In my head, I celebrated Canada Day by singing "O Canada". Tonight, I'll celebrate Independence Day. As a dual citizen, I guess I can do both. :-)

Heck yeah you get to celebrate both!
I heard really good things about Dr. Lynch all the way back in the mid 1990s.
I still see a neuro here in Topeka. He's a total goofball and I really like him. I am fairly stable but if I weren't or wanted 2nd opinion I would sure try to get into see Dr. Lynch!

Stay cool!
Teri

[Mamabug]

:-)

~ Faith

[CarolynCarter]

First symptom was 90 or 91. Diagnosed in 2015. Started my diagnosis journey in 2014.

I do not use any device. I hold on to my husband when out if needed, walls at home.

Doctor never really said if I was rrms or secondary. The closest he has said is that it looks like it was mild but things look to be changing. I even mentioned secondary at that time. He just smiled and he said it could be that we will see.

I was fired in 2008 for not remembering my route. I been staying at home since. I did a little sales job from home. Then in 2014 I went numb all down my right arm and hand so I had to quit. I still never got the feeling back. I filed for disability in late 2015.



I am real thankful to find this thread. I guess my journey has been weird. I feel for the most part it has been fairly mild. In 2014 everything changed. It went from my right arm and hand going numb to my right foot going numb within months later. Then a few months prior my right ear was being effected and I didn't give much attention to it. So in 6 months it went all down one side of me. The next year it went all up the left side of me, but not as severe. I continue to gradually get worse. Like I notice like my heat intolerance continues to get worse each year. The ability to move my foot and hand on my right is getting worse. Currently I am not on any dmd's. There is a new trial out that my doctor is doing. It is suppose to work for Primary, 2ndary, or even relapsing, and it is pill form. I don't like the idea of being a guinea pig, but for some reason I feel drawn to this study. Maybe I am crazy.

Thanks for the thread and I enjoyed reading all the responses.

[Mamabug]

Thanks for posting, Carolyn. It's interesting to see the differences, and similarities, in our paths.

[fotogear]

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

Dx September 2001 - about 15 years
No mobility devices
RRMS
I still work full time, but I have times when I think about leaving the workforce...

[just1yogi]

Great Thread with practical information

This has been a fascinating read this morning. It is interesting to find in one place a synopsis of the progression of MS. Here is my contribution.

1. My initial symptoms began in the late 1990s. I was finally diagnosed with RRMS in 2003 after a Flair that caused drop foot. I started on Copaxone soon after that. In 2012 my balance began to get progressively worse. The focal tremors that started in the late 1990s got much worse. The neurologist told me that I was now SPMS and took me off of Copaxone. She also recommended that the hospital place me on disability status and reduce my hours. In May of 2015 my right leg got much worse causing further balance issues.

2. I now have to wear a brace on my right lower leg. I have to use a cane when I do not have the brace on. Fatigue has complicated the balance problems that seem to be a permanent part of my experience now. And I am very disturbed to discover that I am beginning to have cognitive issues.

3. I have been able to continue working 32 hours a week. I am a supervisor in a large Radiology department and am able to arrange my schedule around my bad days. The hospital I work for has made several accommodations for me under the "disability" I am now under. Without these accommodations I would not be able to continue to work in a hospital.

My confidence level has deteriorated significantly. Which is another factor that has made it hard to continue working. I am 60 now and plan to retire early if I can. I know that getting out of the medical field would reduce my stress level and probably slow the progression of my MS.