Your MS timeline

[Luongo]

Seemed like this would be something discussed ad nauseum, but here we go.

What is your MS timeline? When did symptoms start, when were you diagnosed, what has your progression been since then? What DMDs or other methods have you tried in this time?

The reason I ask is...

1) They say ON AVERAGE (yes, I know it's tricky with this thing) that upon first symptoms (or diagnosis) that in 10 years people will have a 90% chance of maintaining their mobility without any aids. But from what I've been reading here, it seems like many people diagnosed in 09, 2010, and even some in early 2011 already have this problem which would be WELL within 10 years.

2) As a part-time student and employee, I like to get an idea how long people ON AVERAGE people continued working for.

3) It's really kind of interesting.

[Mamabug]

Originally Posted by Luongo

...
What is your MS timeline? When did symptoms start, when were you diagnosed, what has your progression been since then? What DMDs or other methods have you tried in this time?
...
They say ON AVERAGE (yes, I know it's tricky with this thing) that upon first symptoms (or diagnosis) that in 10 years people will have a 90% chance of maintaining their mobility without any aids.
...
I like to get an idea how long people ON AVERAGE people continued working for.

1. First symptoms

• January 2002.

2. Diagnosed

• October 2003

3. Started meds

• Betaseron November 2003
• Switched to Copaxone September 2008

4. Mobility

• Was not very mobile in 2002, following initial flare (stroke-like symptoms). However, when not in a flare, my mobility issues are minor. Some balance issues (including usually requiring hand rails on stairs), and definite stamina issues (can only walk for 20 minutes at a time, for example).

5. Employment

• Was employed until 2008. However, I lost 3 jobs, from 2002-2008, due to serious MS flares that required hospitalization and more time off than I was able to take. I had to take 8 months off of working in 2002, and 4+ months off of working in 2004, due to MS and health issues.
  • April 2002 -- Used all 12 weeks of Family and Medical Leave Act (FMLA) time.
  • January 2004 -- Closed a licensed day care home that I was operating.
  • May 2008 -- Employer was tired of me applying for FMLA four years in a row, due to MS flares and running out of sick leave. He terminated me. However, following my flare of 2008, my stamina and fatigue issues increased, and I likely would not have been able to continue working anyways.
• I realized that I was no longer very employable. I went on SSDI disability and Long Term Disability/LTD (thru my previous employers) in 2008. I was fortunate that both my 1994-2002 job (worked for the county), and my 2004-2008 job (worked for a school district) were public employee jobs. The combination of the two jobs equalled the 10 years employment that I was required to have in order to be vested, qualifiying me for LTD now (and for retirement benefits later) through the state of Kansas. I continue to volunteer in the community, usually about an hour a day, in various places.

~ Faith

[jazzgirl]

1st symptoms in 1975. I was a senior in high school.

Diagnosed in 1979. I was 22 years old.

MRI confirmation when I finally had one in 1993. I've had the disease for 32 years now, am 54 years old, and wheelchair dependent for almost a year now. I progressed slowly, as you can see.

[aitch10]

1st symptoms - Summer of '02

DX'd - April of '03; responded very well to steroids and began Rebif that Summer.

Frequent mild flares and continued mobility and work until getting pregnant in '08. Felt awesome during pregnancy.

Summer '09; gave birth to the love of my life and took major downturn. Breastfed until January '11 then did Solumedrol infusion - responded reasonably well - and back on Rebif.

Suspect pregnancy/giving birth reset the course of my disease

[opiegirl]

My original symptom, when I was 24, was numbness and tingling in my left shoulder that then traveled down my arm into my hand. I was a senior in college and under a lot of stress, I went to the campus Dr. who prick my arm with some needle and then said I think you should see a Neurologist. Went to the Neuro and he did your typical neuro tests in his office and asked me some questions. He said after the fact, what made him send me for an MRI of my Cspine and spinal tap, was when he asked me if I had noticed anything weird physically in the last 6-9 months but had gone away. I said yes, when I put my chin to my chest I get this weird "rush" type feeling down my legs. L'hermitte's is the name of it and it is very common in MS.

I went a couple of years with no new symptoms, then had some pain with movement in my right eye and then lost the vision in that eye. That slowly came back, but still is not 100%, but I can pass the drivers license test and I wear glasses.

I went six years with no new symptoms, but I've always had numbness and tingling in my extremities, especially after exercising or hot showers.(don't do hot tubs )

In 2002 the numbness in my legs got bad and then had pain with movement again, in my left eye this time, and then had double vision for about six weeks. Woke up one morning and it was gone.

Again went six years without any "new" symptoms. In 2009 I had numbness on the bottom of my left foot that slowly traveled up the whole left side of my body to the top of my head. Strangest thing I ever felt...it literally split my body in half. Then it went away from the top down. I feel like that was was the start a a pretty big flare up for me.

After that had some balance issues, numbness in my left hand, that hasn't gone away. Last summer I was experiencing vertigo, but that has gone away. I now have the left hand numbness, like a glove, only up to my wrist and a left foot drop and weakness.

I have always worked. Full time before I had my kids and part-time since then.

Hi Luongo!

1st symptoms started after the birth of my son in early 2006.
Dx'd January 2011.
I have no mobility issues...or any other issues for that matter (for that I am sure grateful) except for occasional dizziness.

JSSL

[Toomnyhats]

1) sx began 1996-7; dx 2008

2) employed 30 hrs/wk but looking for FT w/benefits. No one at my current job knows of my dx.

[KoKo]

Luongo

When did symptoms start

Symptoms (that I could no longer ignore) appeared when I was 41. (motor symptoms, fatigue, bladder issues, heat intolerance)

when were you diagnosed

Diagnosed less than a year later (after all tests and second opinion) with PPMS when I was 42.

what has your progression been since then?

Continuous, slow progression.

Worked for 5 more years after diagnosis.(was given a light duty job for the last couple years of working).

Currently, 12 years after diagnosis, need AFO brace and roller walker to ambulate. Limited use of right arm/hand. Still drive, take care of myself.

What DMDs or other methods have you tried in this time?

No DMD's. Healthy diet, exercise, nutritional supplements.

Take care,
KoKo