For those who have had MS for 15 years or longer

[Ironmoon]

My Answers to Your Questions

Mamabug,
• I can trace my first symptoms back to around 1981. So what’s that…35 years or so?
• I started using a really cool looking walking stick in 1999, (16 years after my first possible symptom), I started using it mostly because I broke my hip when I fell skiing. It wasn’t until around 2007 that I started using a Rollator (4 wheeled walker with hand brakes) when I’m out and about, but now, in my home I mostly get around using a Power Chair.
In 1981, my symptoms weren’t called anything, and just thought to be some sort of back problem that was affecting my legs.
In 1987, my suddenly crossed eye was simply attributed to job related stress, though one doctor at Wills Eye Hospital casually mentioned the term, “MS,” but nobody else thought anything about it. I was told it would most likely go away on its own, which it did.
Finally, in 1993, after a few more mysterious episodes of unexplained numbness in my legs, the chiropractor that I saw, referred me to a neurologist who told me that I had Multiple Sclerosis. Because he was a doctor in a small town, I sought out some experts and went to The Cleveland Clinic. It was there that my condition was referred to as a case of “benign MS”, which was really RRMS.
While my present doctor, a top rated neurologist, has never called my condition, “Secondary Progressive MS,” (I think because there are no approve drugs to treat it and my insurance would no longer cover the Copaxone, which seems to be slowing the rate of progression.), I think the disease has morphed into SPMS.
• I’m no longer employed. Unfortunately, before my symptoms showed any signs of progressing, I quit my job, giving up my health insurance, to embark on a consulting career of my own and failed miserably.
I’m on SSDI. I went on SSDI in 2002, and as soon as I was approved, I sold my house using the proceeds to by a small Winnebago Mini and set off to see the USA. After visiting my friends in the Eastern US, I headed to Santa Barbara, after which I planned on setting out on a “No Plan Journey” that would take me wherever the moment dictated. … That never happened because, after just a few months, while still in SB, I experienced a serious relapse that left me unable to drive. I had to be treated with several days of intravenous high dose steroids and while I recovered, the experience left me concerned about the possibility of a relapse occurring somewhere where good medical help wasn’t available, Skittish about my future, I returned to my childhood home near Pittsburgh, PA, to be close to family, (I’m not married and have no kids), and good medical care. … That all occurred in 2003. I’m still there, but living in a small, one floor apartment house and sold the RV. I now spend most of my time at my computer, exchanging emails with a few of good friends with whom I lived when in college. - Ironmoon (John)

[mjan]

Mamabug,
• I can trace my first symptoms back to around 1981. So what’s that…35 years or so?
• I started using a really cool looking walking stick in 1999, (16 years after my first possible symptom), I started using it mostly because I broke my hip when I fell skiing. It wasn’t until around 2007 that I started using a Rollator (4 wheeled walker with hand brakes) when I’m out and about, but now, in my home I mostly get around using a Power Chair.
In 1981, my symptoms weren’t called anything, and just thought to be some sort of back problem that was affecting my legs.
In 1987, my suddenly crossed eye was simply attributed to job related stress, though one doctor at Wills Eye Hospital casually mentioned the term, “MS,” but nobody else thought anything about it. I was told it would most likely go away on its own, which it did.

Finally, in 1993, after a few more mysterious episodes of unexplained numbness in my legs, the chiropractor that I saw, referred me to a neurologist who told me that I had Multiple Sclerosis. Because he was a doctor in a small town, I sought out some experts and went to The Cleveland Clinic. It was there that my condition was referred to as a case of “benign MS”, which was really RRMS.
While my present doctor, a top rated neurologist, has never called my condition, “Secondary Progressive MS,” (I think because there are no approve drugs to treat it and my insurance would no longer cover the Copaxone, which seems to be slowing the rate of progression.), I think the disease has morphed into SPMS.
• I’m no longer employed. Unfortunately, before my symptoms showed any signs of progressing, I quit my job, giving up my health insurance, to embark on a consulting career of my own and failed miserably.
I’m on SSDI. I went on SSDI in 2002, and as soon as I was approved, I sold my house using the proceeds to by a small Winnebago Mini and set off to see the USA. After visiting my friends in the Eastern US, I headed to Santa Barbara, after which I planned on setting out on a “No Plan Journey” that would take me wherever the moment dictated. … That never happened because, after just a few months, while still in SB, I experienced a serious relapse that left me unable to drive. I had to be treated with several days of intravenous high dose steroids and while I recovered, the experience left me concerned about the possibility of a relapse occurring somewhere where good medical help wasn’t available, Skittish about my future, I returned to my childhood home near Pittsburgh, PA, to be close to family, (I’m not married and have no kids), and good medical care. … That all occurred in 2003. I’m still there, but living in a small, one floor apartment house and sold the RV. I now spend most of my time at my computer, exchanging emails with a few of good friends with whom I lived when in college. - Ironmoon (John)

Oh my John, what a story, what a life you have lead! Lots of losses, changes, yet you seem rather spirited or resigned or both, yes?

Just sending you a hug and hope for continuing healing your heart~
Jan

[freeinhou]

* dx'ed early 1988, so 28 years. If I had it earlier than that, I didn't know it.

* I use a walking stick only when I'm hiking. The Cumberland Plateau in Tennessee is pretty rugged. Those excursions into the Daddy's Creek gorge are pretty challenging.

* I don't see a neuro regularly. MS is not one of my bigger concerns. Guess I'm probably still RRMS

* I'm retired. Took retirement at minimum retirement age of 56, 2 years ago. I actually got the minimum 10 years service in with the federal government, what with the army and NASA (I was one of the shuttle mission managers at Johnson Space Center). This 56 yo + 10 years thing was designed specifically for people in congress who don't really need a $$ pension but need medical coverage pension. The government is very self serving. So I got a pension but all it does is pay for insurance (health,dental,vision,life), which suits us fine. Federal employees are exempt from the ACA. Again, self serving.

If you're affiliated with NMSS, I'm all over the Altair database. Started volunteering in the early 90's at the Coconut Grove FL 5 km walk. Volunteered at the MS150 bike ride Houston-Austin for over 10 years and now work the Tennessee Jack-n-back MS150 bike ride (just a little enticement from the Jack Daniels distillery on this one).

Tom

[sewhappy]

This is interesting because I have been thinking lately about my initial diagnosis as I am approaching the 20 year mark this Spring. My daughters were toddlers and my son was just a twinkle in my eye at the time.

I feel grateful that I still work part time and only use my trekking poles for longer distances. Most of my coworkers don't know I have MS. I occasionally am asked why i'm limping and I usually state that its just an old war injury. I do suffer from fatigue, some cognitive issues and a few other symptoms.

I believe I have transitioned to SPMS but my neuro has never came out and said so. I have not had an exacerbation in may years but have had some progression in the last few years.

While I am grateful that things are not worse, I am still sad about the things I have lost and worry about the future.

I do try to eat healthy, ride my bike(on rollers) every day even for short periods, meditate, use essential oils and just keep moving forward.

Peace and good wishes to all.

[Thinkimjob]

Diagnosed 1988, first symptoms two years before.
Really can't walk without a rollator. Arms like Arnie, legs like a starving bird.

Was "fine" until four or five years ago, then my left leg went bad as my motor skills slowly got worse.
Nothing works properly anymore.

I must have a martyr complex, because I still work two days week. Always took the drugs, can't really see the point.

Can't have Lemstrada, thanks to the aneurysm; can't get the aneurysm fixed once and for all, because it is not worth the risk of having a stroke.

[palmtree]

Mamabug,

I'm so glad you asked this question. All these responses are like scientific research. We learn more from each other than everything we read about the studies that have been done.

[Mamabug]

Mamabug,

I'm so glad you asked this question. All these responses are like scientific research. We learn more from each other than everything we read about the studies that have been done.

Thanks, Palmtree. I've been thrilled with the number of responses this thread has received. I've found it interesting to hear how MS is affecting others who have had it for a long time.

[Fishytrout]

Mamabug,

I'm so glad you asked this question. All these responses are like scientific research. We learn more from each other than everything we read about the studies that have been done.

The stories here, while they are very interesting, should not be seen as Scientifically accurate. When Scientific Research is done it is obtained, then presented in a manner that is accurate for a "population", meaning it is relevant to the group it is studying.

[Mamabug]

The stories here, while they are very interesting, should not be seen as Scientifically accurate. When Scientific Research is done it is obtained, then presented in a manner that is accurate for a "population", meaning it is relevant to the group it is studying.

Oh, not scientific at all. Even thinking about that brings back nightmares of my college Stats (Elementary Applied Statistics) class.

This is called "anecdotal evidence", not scientific evidence, and really would carry very little weight in the scientific community.

That being said, like Palmtree, I have also found it interesting. And, it is easier for me to read and more interesting than evidence in scientific journals.

[Shoo]

how long with ms

I found this very interesting.

Here is my ms journey

My onset was 5 or 6 years before being diagnosed in 1988 with vertigo

I was rr until about four years after being diagnosed now I'm sp

Didn't use a cane until about 1993, then went to a rollator, then a wheelchair, and when going away later on hubby used a transport chair outside the home, have a power chair, but now I'm home bound and can't walk only way out of the house is by ambulance

Went on disability from work in 1998, I worked at a state prison and went on early retirement disability, right after I got SSDI

Shoo

[nkh18]

Mamabug, My first symptoms were 30 years ago, and I was dxed 3 months later when I had my first MRI. I started out RRMS for a few months, then had no symptoms for about 20 years. I slowly developed mild symptoms becoming SPMS. I could still walk short distances with a walker 4 years ago, but now use a wheelchair. I worked part-time as long as I could, but went on SSDI in 2006.

[mjan]

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.

Jessica, I just want to thank you for your teaching when you have an illness too! I also was told I have carpal tunnel in both hands when they were doing my EMGs for arms and legs I have NO signs of carpal tunnel but something is wrong with my right hand. Sorry for the early onset, must've been so hard. Are you legs weak that you need a walker now? Hope things improve best they can. Hugs, Jan

[MBC3mom]

MS for 16 years that I know of
[*]How long since your MS onset (not diagnosis, but onset)? MS onset 1999 with dizziness, balance issues. I was told it was due to stress at work. First major flare was major depression with severe vertigo in 2000. I was told it was all in my head. Since I was always a hard worker, competitive by nature and very independent, this lead to my hiding any medical symptoms that I thought might prompt another embarrassing "it's all in your head" diagnosis. I knew nothing about ms and had no idea that all the symptoms that came and went were related and caused by the same disease. After 11 years, I had optic neuritis and was diagnosed with ms. It was quite a shock to me, but once I researched the disease, I knew I had had this for a long time. So, formal diagnosis in 2008, but a lot of damage had already been done.
[*]Do you use a mobility device? Regularly? Occasionally? What do you use? I use a cane (sometime 2 canes) whenever I leave home and most of the time at home as well. I use the motorized carts to grocery shop and a walker with an attached chair for outings that require a lot of standing/walking - I rarely go on such outings. I know this year on vacation, I will need a wheelchair.
[*]Do you still have RRMS or has your dx been changed to SPMS? I have not seen my doctor in 2 years. At that time, he still had me listed as RRMS and wanted me to continue using a DMD. He is a wonderful neurologist and very nice, I think part of his treatment plan is to remain always positive and try every possible treatment. However, I already knew I was SPMS. I stopped having flares shortly after I went out on disability and have just steadily grown weaker since then.
[*]Are you employed, or on SSDI? When did you go on SSDI? I left work on disability in 2010 mainly due to fatigue and cognitive issues (difficulty staying organized, focusing on my work which was very frustrating for a finance director!)

I focus on my family and spend as much quality time with them as possible. I haven't been on this forum in a long time, I think because I try to avoid thinking about my ms, but from year to year I notice how much worse my disability has become.
[/LIST]

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]

[melody60]

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

I think I may have had MS since the late 90's. At that time, a doctor diagnosed me with an inner-ear infection. I had dizziness off and on for a few weeks as I recall, and then it went away. I was diagnosed in 2005. I stopped working in March 2011, and I've been on SSDI since Sept. 2011. I began using a cane on a daily basis in 2013 due to foot drop. I use it to walk to the car, or occasionally around the house. My walking can be better or worse, depending on the weather. My husband purchased a mobility scooter for me in 2010. We like to cruise, and I was beginning to have more and more mobility issues walking on the larger ships or in large areas. So, rather than waste my energy trying to walk long distances, or having him push me with a wheelchair, I use the scooter to get around in the larger venues. I have a rollator I use sometimes as well. I don't use either in the house. My biggest problem is walking.

I think I'm SPMS. I haven't directly asked the neurologist. I don't have a fantastic rapport with the Dr. He's new, and I've only seen him a few times. Another reason I don't ask is that I am currently on Avonex, and don't want to change. MRI's have remained unchanged since 2006.

For now, I can still walk, or sort of walk and stumble. I don't dare want to fall. The cane doesn't help me to walk better, it only serves to help me with balance. When I exercise, I use a walker so I can place both hands on something, and I feel I can balance better. I don't want to depend on the mobility scooter. My first neurologist always told me that "the more I walk, the longer I'll walk," I try to get little walks in throughout the day.

[poppydarling]

This is such an interesting thread – I'm so glad that so many of you are doing so well after onset. I hope it's a combination of good doctoring, good treatment fit, and no doubt the strength of sheer will.

Looking back, my onset can be traced to gym class when I was around 8-9 years old . I was doing a somersault and felt a strange buzzing in my neck and head and being a kid, I kept pulling my head forward to feel that Lhermitte sign (though my doc doesn't believe in pediatric MS :-). In my late teens, waiting in line, I would lose my balance and just fall off my feet. I had a short bout of optic neuritis at around 26, but few other symptoms until 40, when I went to the neurologist with a numb arm and little finger. Got a second opinion and that's when I was diagnosed with "benign MS."

I was walking (shakily) with a cane until I went off Tysabri in 2010 (allergic reaction) and had a terrible flareup that left me with multiple deficits and major foot drop. Now use a Rollator and AFO at home and a scooter for any distances since I tend to trip and go boom as I can barely lift my right leg. Can't drive at the moment but hope to get hand controls on my car.

I think it's likely after 35-40 years with MS that I'm sliding into SPMS but we don't discuss it much because there's not much to be done about it. And that makes me very angry about where we're at medically since MS has been known for 100+ years!

During the bad Ty flare up, I had to go on sick leave from my active full-time job and realized I just couldn't return to that pace. I fought for a part-time position from home, which I'm very grateful for (though I had to hire a lawyer to get it, and prevent them from firing me outright). I had STD/LTD disability insurance through my employer, and I thank God every day that I did. I'm the sole breadwinner in my little family and the one who keeps a Great Pyrenees and two kitties in kibble