For those who have had MS for 15 years or longer

[JessicaW]

good morning kim-mastro

Crazy while confusing to me w your Dr saying your numbness in hands is from the carpal tunnel. I also found I had this near same time as dx. This happened for me in 2001. Could this be the determining factor in the difference between how our Dr's speak to us? Only reason my ct was found was bc of pain I was feeling at that time. My most recent dx of PRMS finally seems to explain my entire experience w MS since Dx. I had to ask for cane early on, crazy but I walk in a more stable manner w it. It also helps relieve whatever pain I'm experiencing in whichever leg I'm feeling it in. Had to keep pursuing questions to Dr just to get one. 1st time I ask for cane, Dr gives me Rx for old school walker, near age 19. I refused & then finally did get cane that I had to pay for anyways. I find now however that I'm in need of a rolling walker I can sit in when I need to rest.

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!

[Karenkay]

This thread is very interesting!!

How long since your MS onset (not diagnosis, but onset)?
In retrospect, I know I had symptoms as a teen. But the first time it brought me to a doctor was in late 1988 and diagnosed a couple weeks later in 1989 at the age of 29. 26 yrs now.

Do you use a mobility device? Regularly? Occasionally? What do you use?
Started using a cane 2010. Started using a Rollator full time by 2013 because I was falling frequently. I use electric chair for shopping, etc.

Do you still have RRMS or has your dx been changed to SPMS?
Initially diagnosed RRMS, but transititioned to SPMS 2012.

Are you employed, or on SSDI? When did you go on SSDI?
No longer employed since 2007. Went on disability 2010.

[Canary54]

How long since your MS onset (not diagnosis, but onset)?
Diagnosed in 2006, but had what I now know was first episode in 1977 (age 24).

Do you use a mobility device? Regularly? Occasionally? What do you use?
Had to start using a rollator at work 2 months ago due to a couple of falls. Don't use anything at home. Rent a mobility scooter on vacation so I can go further and not slow others down.


Do you still have RRMS or has your dx been changed to SPMS?
Neurologist told me he would consider me SPMS 3 years ago, but have only had 1 other flare (in 2006) since my first episode in 1977. Do people ever start out being Secondary Progressive?

Are you employed, or on SSDI? When did you go on SSDI?
I work full time as an Executive Assistant; sedentary but VERY stressful job. Work 5 days a week, between 8-12 hours a day. Neurologist says I'm "not bad enough" to qualify for disability, but sometimes all I can do is work and sleep!

[Mamabug]

... Do people ever start out being Secondary Progressive?...

Nope. That's why it's called Secondary Progressive.

In Relapsing-Remitting MS, the disease is characterized by relapses, caused by inflammation. After a certain number of years, it often progresses to Secondary Progressive MS, and the inflammatory process changes to a more steadily progressive phase characterized by nerve damage or loss.

Some people, however, begin with Primary Progressive MS, which, from the outset, is characterized by steady worsening of functioning, without any distinct relapses or periods of remission. Although occasional plateaus or temporary improvement may occur, the progression is continuous.

[kim-mastro]

Crazy while confusing to me w your Dr saying your numbness in hands is from the carpal tunnel. I also found I had this near same time as dx. This happened for me in 2001. Could this be the determining factor in the difference between how our Dr's speak to us? Only reason my ct was found was bc of pain I was feeling at that time.

Jessica-I had no pain w/CT just numbness. It's a little confusing! I probably should get more info from my Neuro! It's a little scary how drs talk to us. How can my symptoms be caused by MS then 6 mos later be caused carpal tunnel? Like I said - confusing!!!

[msgijo]

•How long since your MS onset (not diagnosis, but onset)?
I was 'told' that I had MS in 1992. Diagnosed in 1995. ON is what led to my dx - the optomoligist(sp) is the one who told me I had MS, and referred me to a neuro, who took a few years to dx me. But looking back some of the same symptons that give me trouble now I had as early as 1970 (9 years old)

•Do you use a mobility device? Regularly? Occasionally? What do you use?
On good days nothing. Others days I will use a cane if I am going in the yard (to feed up, check mail). I have a wheelchair that I have used, but not for normal use. And a walker that I have never used. (All mobility equipment was inherited from my grandparents except the cane I use which my DH made for me - his dad also made one for me)

•Do you still have RRMS or has your dx been changed to SPMS?
To the best of my knowledge I am still considered RRMS. Neither of my neuros want to talk about SP, but at times I wonder ...

• Are you employed, or on SSDI? When did you go on SSDI?

I worked for 12 years after dx, but filed for SSDI in 2008. It wasn't exactly what I wanted to do, but afterwards I realized that it was actually what was best for me. Seems that less stress = fewer flairs for me.

The more I learn about MS the longer it seems that I may have had it . I am OFTEN told how well I am doing to have had this for as long as I have (they are always talking about since dx). But even realizing that I am mid 50's I cant help but wish that I was in as good a shape I was even 10 years ago - and I do not believe that age comes on so quickly. But what do I know - I have never been this old before .

[DonnaD]

How long since your MS onset (not diagnosis, but onset)?
I was diagnosed in 1986 (30 years ago) age 23 cause my right side was numb - family Dr. suspected MS right away. In retrospect, I may have had MS tiredness before but nothing to suspect anything more than need for more sleep

Do you use a mobility device? Regularly? Occasionally? What do you use?
I don't use anything except a plastic AFO for drop foot. I can walk about 300 yards unaided - Then I get tired.

Do you still have RRMS or has your dx been changed to SPMS?
I have RRMS. When 5 years passed and I had no flairs but my walking was deteriorating, I asked my neuro if I now had SPMS - He couldn't say but felt that after 17 years Copaxone wasn't helping me so I switched to Tysabri and for 5 years I have been stable

Are you employed, or on SSDI? When did you go on SSDI?
I do not live in the US but, yes, I do receive disability here. In 1992 I had a large attack and started receiving 100% disability. I've gotten much better than that but MS here gives you a permanent disability rate (if you get worse, you can apply for a higher percentage but they won't take my 100% away from me). I receive what a part time job would earn me so it doesn't pay for me to work since I would lose my disability while I was receiving a paycheck for the same amount. (OTOH, I would like to go out to work like everyone else)

[TinaP303]

•How long since your MS onset (not diagnosis, but onset)?
Symptoms of TN since min 1980s-mis diagnosed as dental and/or sinus problems. Sent to Neurologist by ENT in 2011. Immediately diagnosed w/MS after first MRI

•Do you use a mobility device? Regularly? Occasionally? What do you use?
Don't use at all (very thankful!!).

•Do you still have RRMS or has your dx been changed to SPMS?
still RRMS, lucky to have it so mild.

• you employed, or on SSDI? When did you go on SSDI?
full time employed.

At first I wasn't even sure I "qualified" for the 15 year marker since I was diagnosed in 2011, but my neuro says the TN (my most persistent & oldest symptom) really was caused by my MS, so "lucky" me has had this "jewel" since the mid 1980s. dang. I really AM super lucky to have had such a mild case. Yes, the TN is massively evil, but that & migraines are ALL I have to deal with. I can handle that...

[SNOOPY]

•How long since your MS onset (not diagnosis, but onset)?
Symptoms started in childhood. Onset estimation: 40 to 50 years.

•Do you use a mobility device? Regularly? Occasionally? What do you use?
Occasionally. I use Trekking Poles.

•Do you still have RRMS or has your dx been changed to SPMS?
In 2013 I was told I was SP. But, I will be discussing this change with MS Neurologist this year as I am starting to suspect I could still be RR.

[agate]

• How long since your MS onset (not diagnosis, but onset)?

Hard to say about onset but diagnosis was 1980. Onset may have been around 1978 or more probably 1961.

• Do you use a mobility device? Regularly? Occasionally? What do you use?

I sit in a wheelchair most of my waking hours but walk about 1800 steps a day or less. If I walk outside I take a walker with wheels. For shorter distances I'm usually OK on my own. For longer trips I'm in my wheelchair and using the paratransit system's lift-equiped vans.

• Do you still have RRMS or has your dx been changed to SPMS?

It's been SPMS since the diagnosis in 1980.

• Are you employed, or on SSDI? When did you go on SSDI?

I went on SSDI shortly after the diagnosis in 1980. The neurologist told me I was eligible for it. I was wondering how in the world I was going to earn a living any more.

Since I reached retirement age the SSDI automatically changed to Social Security retirement benefits but the amount I receive is the same.

[Mamabug]

I've had so many responses to my questions. Thanks so much, everyone, for a few things about your MS and your life.

Keep 'em coming!

[palmtree]

This is an interesting thread. At first I thought it didn't apply to me but I was so determined not to get MS all my life that I ignored the road signs.

In a hot summer night of 1998, I was sitting and eating dinner and suddenly got extremely dizzy. I tried to carry on and ignore it it got so bad I crawled to my bed and lay there hoping to regain my balance. It just got worse so I crawled to the phone(we didn't have cell phones in those days) and called 911. I spent the night in the emergency room but the dizziness wouldn't go away. So they admitted me to the hospital. After 2 hours of sleep and a little breakfast it all went away.

That was one incident. In 1990 I start ice skating for a hobby. I progressed by leaps and bounds and sailed across the ice. Then, about 3 years later I took a lesson and could not do a lot of the basic maneuvers that I used to do. The skates were wobbling if I was on one leg.

I gave up ice skating for Salsa dancing. I enthusiastically went 3 nights a week. We went doing double turns, triple turns and endless turns. One night I was dancing with a nice guy but every time he turned me I would lose my balance. He laughed at me so I gave up dancing.

After 2000 the heat started affecting me. I would dread the summers. I knew the hot weather was messing with my nervous system but never allowed myself to think MS. Around 2005 the RLS started. I Googled RLS and MS was considered to be one of the causes. Still I kept the blinders on. When I walked my right foot was so clumsy. I thought it was just emotional and needed to walk straighter. But in the back of my mind I wondered, 'is this was foot drop feels like?'

Then the urology problems started. I had to start catching but was glad it wasn't MS. But at the same time wondered why I wasn't being referred to a neurologist to make sure. Around the same time, I started falling asleep by the side of the road every night on the way home from swimming. I knew something was seriously wrong with my body but figured we would find out soon enough
No use rushing into a bunch if tests only to be told it was all in my mind.
[B]my first symptom was in 1992[/B. 16 years before diagnosis.I was diagnosed in 2010 so that would be 22 years ago.

Mobility device:
cane when I'm out. Walls when I'm home.

RRMS/SPMS
At fist RRMS, 2 months later SPMS, then Tysabri was helping,so maybe I'm still RRMS. Don't know.

Employed?
Went on SDSI in 1988 and was never able to return to work

[salo558]

ms for a long time

DX 91 on tec among a lot of meds that I'm taking

[betterme]

24 yrs- SPMS

24 YEARS. The first ms symptom that I can remember was in 1992. I was on a softball team and could not use my legs to get to first base. I was in my first month of my only pregnancy (age - 30). My next symptom was in 1993 after I gave birth to a healthy boy. During the first couple weeks of my 6 month maternity leave I was so weak that I had to use a chair or the stairs to crawl up and stand. Went back to work and, luckily, I had no issues other than two falls due to bad balance. I thought I was just clumsy and thought nothing of it. It was not until I was 48 in 2011 that I had a left foot drop and started falling that I had an mri and was diagnosed with ms.

I was using a cane regularly starting in 2011, then went to a walker in 2014, and have been in a wheelchair since January 2015.

My dx was initially RRMS in 2011 but was changed within the next year to SPMS.

I am currently unemployed as I cannot do my job of 26 years while in a wheelchair. I need to learn a new trade. I went on SSDI in May of 2015.

[mjan]

Great discussion.

~ diagnosed RRMS 02/2010. I was 61 years young.
~ suspected onset several decades of symptoms, some as a teen.
~ walk with cane outdoors, hang on to things in house. Used rollator in 2010 relapse.
~ lost my career due to cognitive issues and suspected type of seizure.
~ got SSDI, then SS when I turned 65.

Hugs to my huggable ones!
Jan