Hi

I know that there will be many who come on with the hard facts you are looking for, but I would like to say that I have had these thoughts, I was dxd in 2005. But I have just decided that the truth is that MS is too different in too many ways, what was health before, what is the history of the disease, when was the first real beginning, what is your stess level, on and on, to compare myself to anyone and decide what I think may happen when.

But of course, will be watching the answers here!

Ditto on what nikki says, so different for everyone.

To give you some hope, though, I am still working full time and plan to for at least 5 years or more (of course, that's not really up to me, is it!). I use a cane now -- it took me 3 years from diagnosis in 2007 (age 54) to get to the point of using the cane full time. However, I had my first attack 10 years before diagnosis that left no permanent defects -- so it's taken that long to do any damage. I expect that I will need a w/chair in the future OCCASIONALLY, for walking great distances like airports or amusements parks, but otherwise, I think I'm looking at using a cane or walker as my main means of getting around.

I am on Rebif and Baclofen.

Oh, and I forgot, I am 52, so dxd at 47. I use a cane, but not always. I stopped working in January of 2009, but worked very full time until then. I worked on my feet like 8 or more hours a day, and around ovens and ranges and lots of heat, and I had to do inventory and always be dealing with ten things at once. So that just wasn't the right thing anymore.

I have had my MS for about 20 years. I started with the RRMS, but am now SPMS. So, I guess I can tell you a little about my story.
I was only dx'd about three years ago. I had signs earlier, but, I chose to not go to a dr. and I just figured I had issues ...in other words, i dealt with things without knowing what my MS issues were about!

I was started on Avonex when I first got the dx., but, I recently was switched to the Tysabri, due to the high level of activity in the spine.
I use a cane for everyday walking. If I need to go somewhere (like department stores, or malls ) where walking will be a requirement, I usually take the wheelchair along, and use it as necessary, due to the fatigue that sets in quickly.

So, my wheelchair is not something I need all the time, but, I am grateful I have it when I need it.

I was told nearly 3 years ago, there is no way I could return to work. My Nerve damage has taken it's tole on me, and I no longer have decent balance or abilities to accomplish work things. Many reasons. (Cognitive, balance, speech, and more).

I wish you well.
Sherizi

Blind while running at 44. My wife saw the second time and dx me as MS. That was 88. Worked for 10 years post MS My cognitive issues was the reason I got out of my several successful business. Very recently remarried after many years living alone. I am on the Swank diet and work out every day at a local gym. I no longer take any MS drugs, Started the scotter 5 years ago. I purchased a wc van 3 years ago. Now use it every day. I am 64 and PP. My cup is half full not half empty. Lou

As you are diagnosed as Secondary Progressive, discussion of the standard disease modification treatments is moot. They are for treating Primary Progressive. It is a shame your fears kept you from Tysabri, as 12 - 24 deaths (depending upon source) amongst over 61,000 users (using it monthly) are pretty good odds - In my opinion.

In my case, the ability to work and use of a wheelchair are entirely completely unrelated. As to your other questions, they are addressed in my profile here on DS.

My symptoms first started in 1981( they thought I had a stroke)..made it through without many problems till 2002 (optic neuritis), breast cancer survivor 2003. Kept on working till last September when balance issues, fatigue, cognitive issues affected my job performance. Now on disability & retired in December. I need a cane on bad days. I consider myself lucky that I had many symptom free years. I now concentrate on taking care of myself & in spite of less money, my stress level is much improved

Oh, i forgot, i was on Rebif, then Betaseron & now on Copaxone, plus I follow the Primal Diet..

Two things before I ramble on with the specifics of my situation....

1. Everyone reacts differently to each medication. Only you and your Neuro will know whats right... Don't be afraid of that.

2. I have heard of many people with MS work their way back from being in a wheelchair with physical therapy, the right meds and diet, patience, and other healthy lifestyle choices. It takes persistence. I intend on being one of those people.

I am 26 right now. I was diagnosed with RRMS in July of 08. I was 25 at the time.

I think I have had some of the minor symptoms as early as high school. I was tired a lot and I had some twitching. I started on provigil early in 06 after a sleep study shown that I was way too tired and my REM sleep cycles were off.
The major symptoms started in Oct 07 when while skating I had this weird tingling and lost control of my left leg. It was all gradually downhill from there with weakness, bladder and bowel issues and pain.
I did the splitz ended up in the ER and was diagnosed after that. I have averaged a flareup about every two months give or take since then.
I started on Rebif and switched to Tysabri in July 09. I had 2 flareups during my washout period between the 2 drugs. The 2nd one put me in the hospital and ultimately in the wheelchair.

Tysabri works wonders for many people, just not me. Counting July I have been in the hospital 5x in the past 6 or so months with flareups mainly... and some weird skin infection in Aug. My neuro took me off of Tysabri recently and wants me to get another opinion as far as the combo of drugs I am to be on. My neuro refuses to classify my MS as anything other than a progressive relapsing remitting due to the fact that I still respond quite well to steroids.

I have made progress with Physical therapy. The past 2 times I have been breaking records when it comes to walking distance compared to what I was in July. I WILL walk again decently.... End of story case closed.... The question is how long will that take.

The last time I worked was sometime in June. I have been attempting to be a student, and my job was events based so I think its a little different as far as my situation. Of course I intend on getting back to work eventually... My employer knows whats up and if I can walk decent, I can guard my parking lots and wave my shiny orange flashlight around... I was a traffic director at the events center here at the school. Pretty easy job as long as I can walk. It was never full time and thats ok considering.

Any questions dont be afraid to ask! Keep up the good fight and make sure that your muscles get adequate movement. Whatever happens from there happens. A wheelchair is not the end of the world.... Remember also.. Its not disabled.. Its differently abled.

I have to agree that each case is so different and fickle... My first symptom - it's debatable... I always blamed myself... The bladder issues in 98 I blamed on coffee abuse. I was 39 when I got dx'd and started on Copaxone... I'm now on Rebif and although I'm classified as RRMS, we talk a lot on whether it's really PPMS.

My job was elminated Sept 2008. Although I think it was really recession measures, I was having great difficulty having to walk around 2 floors of my firm to deliver payroll. It was noticeable as some would ask if I was ok or hurt my leg and I would just tell them I have MS so my legs get tired. I had to stop on each floor to rest toward the end.... Thank God for the people who are my friends....they looked out for me.

I do have a motorized wheelchair. It broke my heart one Christmas when I discovered I couldn't even go into the Mall for something... by the time I would get to the store to look for something, I was too tired to shop. I used to love art shows and last time my b/f had to wheel me around the whole place and find me a restroom every hour as well. He said he didn't mind at all. Now I have a motorized chair but can't afford a lift for the vehicle or to have anyone fix the door step so I could use it although I'm trying not to use it....

Hi, all. I am on Copaxone and take a drug called (LDN or low dose naltrexone) daily at bedtime.

I have taken all of the "disease modifying drugs" except Tysabri (I will n ot be taking that as I believe only a cure is worth a chance of death)

I settled on Copaxone as it seemed the least harmful with the SAME BENEFIT,.

I take LDN as even my PCP said "well, it can't hurt you". I figure Copaxone is the only MS drug that can be taken with LDN (the others don't work if taking LDN.

Does LDN work? What does work mean? I haven't gotten better but not worse either. and it is reasonably priced.

I'd love to have my balanceand short-term memory back, At least I can walk (even with a cane). I don't want to be on a scooter so I started walking (a lot). I really had to "push through" the pain which did eventually get batter.

I try to walk, a lot and have found that it finally seemed to help the aching in my legs.

This site is good for two reasons. The support that I've received here has been and upliftine BUT

The best was meeting my wife (Love of my life) here and that has been the best thing that has happened to me. Now, I don't know that will happen to all but to have a wife who really understands my problems is a blessing.

L:arry.

MS for over 23 years... Over 8 years on Betaseron (the only thing available when I was dx), quit when the open sores became an infection under my skin... Nothing for 5 years... Then Copaxone that last year+... I will fight chair til my last breath...

There is no set course of MS... Nobody (including the best doctors) know what will happen...

FAITH not FEAR!!! xoxoox Cj (Cindyjo)

I can't speak personally to any of what you asked, but my aunt and uncle (siblings on one side) both have MS, and this is what I know of their disability:

- Both have had MS since before I was around, and I'm 26;
- Uncle is in a wheelchair but can hoist himself to/from other seats;
- Aunt uses a walker for long distances, and a cane for short;
- Both are over 60 and have never been on CRAB drugs because they weren't available back in the day and they don't seem to be progressing much at this point.

We're all afraid that we'll lose a major part of our lives to MS, like mobility, but it's not inevitable and even if it happens, it's possible to get around it without being wholly dependent on others. Again, you and I have little in common MS- or life-stage-wise, but trust one overly anxious girlie here: try very hard not to worry about what may or may not happen. In the meantime, I hope you feel better and your mobility doesn't continue to decline.

I am 48 & was dx in 2005. Couldnt tolerate betaferon or avones so not on any crabs now. Neuro said no to tysabri as I have other health issues & lots of steroid use so it would put me in the high risk category.

I use a walker inside & for short distance & as wotk to get about safely. I use scooter to get to & fro work & on the train & also if we are going shopping or somewjere that is a lot of walking.I didnt like the idea of either of the walker or scooter, alaso have a w/chair that we use sometimes.

remember everyone is different & ms is different for all. I look at it that using the aids allows me to do more than I would be able to do.

I was afraid of using these but not all the time. I look at it as quality of life sos will use whatever I can to help me. O am still working but part time npw - 3 dayys a week & 5 hours not f/time.

Higs, Sue

Like you, I find the "uncertainty" factor is difficult to live with. My initial symptoms were with my legs, yet I continue to be ambulatory with intermittent use of a cane. Sometimes I need a cane just for a trip to the supermarket, sometimes I need it for several months. However, if I wish to visit a museum (which is a passion on mind), I would need a wheelchair. My legs cannot endure the walking and standing... even on good days.

I do not think I will ever need a wheelchair on a permanent basis, and needing one for short periods of time does not scare me. I want to remain mobile like you and hate the thought of becoming wholly dependent on others. Yet, should you need a wheelchair, this does not mean you would be totally dependent on others. You may need some help around the house or with daily duties, yet remain somewhat independent. For me this means I am able to bath, clothe, toilet, feed myself and enjoy a hobby without assistance. I continue to drive and do not have family around to help on a daily basis, but I have a home health aide come in 3 times a week.

Currently, I take various classes at the community college... you know stuff I never had the time to do while working full-time. I am taking Spanish now and determined to learn the language. I love to read, yet my ability to read had diminished because of mental fatigue. I discovered the joy of audiobooks. Sometimes because of the narration the audio is more enjoyable than the written word.

However, I can no longer drive long distances (over 1 hour), or enjoy many of the activities I did in the past. Being able to adapt and having a good sense of humor will get you through the day... believe me. I will end with a funny story to lift your spirits.

One of my hobbies is making beaded jewelry. Last week, I dropped an entire case full of beads on the floor. Before I could react, I just kept saying out loud to myself "I am NOT UPSET....I like beads on the floor" . I sat down on the floor (rather than bending), gathered my beads as I repeated my mantra, and soon discovered I was not upset.

I do not intend to make this sound easy, as I have become quite accustomed to small accidents. After a while, it becomes routine and I sometimes think that it takes actual "Talent" to be able to get into some of the situations I find myself. Tell me, who do you know that can trip over AIR?

My best to you, Alita