I don't recall this being discussed before, but you know these ms brains. I was wondering how many here use wheelchairs, scooters, any type wheels because your legs no longer work? Also, did you use any of the CRABS, LDN, etc. at some point in the course of your ms?

It seems like many are still functioning fairly normally, working, driving, etc., and after reading the comments in another thread about a high percentage of MSers not ending up using wheelchairs, I was curious if this is really true. Perhaps age has something to do with it also. Personally I'm now 63 (YIKES!), SPMS, and have been using "wheels" for around three years. At diagnosis 17 years ago there were no CRABS, but when Beta came along I tried it with horrible side effects. Also tried Avonex and developed Fibromyalgia, on to Novantrone, only two doses because of side effects. Now LDN and have remained about the same, I only wish my neuro would have gone along with my request for it earlier in the "game".

Perhaps now with so many drugs available right from the start, fewer MSers will end up in chairs. Hope you'll feel like joining in on our little survey so we can compare our NT group with the "Average".

Hope your day is going as well as possible.

Hugs..........and chocolate........

Okay, Judy, let's see.

For me it started at 19, possibly earlier, but that's our mark. I had a six-week hospitalization due to dehydration from intense vertigo and the fact that I had somehow become depressed and mentally ill overnight.

Life went on well until 28 when my right pinky tip went numb. By 30 it had spread to more of my hand, but life continued. By 32 I was diagnosed and in a major exacerbation that lasted 22 months and basically ended my career.

At 35 I got my manual wheelchair for long distances. At 39 it was the scooter because I could no longer propel the chair. Last fall, at 43, my neuro said she thinks we're looking at SPMS and it's time to be fitted and prequalified for a power chair. I didn't go because my mind isn't ready for a power chair.

I'm 44, almost 45 now and have a fleet of wheels, 2 scooters, 2 rollators, the manual, and lots of rolling desk chairs.

I had been on Beta for almost 4 years but couldn't handle the mental side effects so interferons were nixed. Then Copaxone which I just quit July 1 because I am convinced that it has done nothing in these last 5 years as I have been in a steady progression the entire time. My neuro is now exploring the chemos, LDN, and Tysabri for me and we will make a new plan in October. Right now, I just need a break from all this.

I still drive (thankfully, it's my left leg that's dead weight), and I do almost everything I want, just differently and a lot more slowly.

Hope I got everything!

Hi Judy,

I have been dx'd for 21 years, 7 years before Betaseron became available. I have never been on any of the MS meds....DMDs (CRABs) nor have I ever tried LDN. I have been known to use symptom management meds but I don't stay on anything permanently or on a regular basis.

I don't use wheels and I have now been told by my neuro he does not want me using wheels (he wants me to continue using my legs for as long as possible) nor does he want me using any of the DMDs.

I actually do pretty darn good and my neuro agrees. I am 46.

Hi Judy, I think you know my story by now, but let's see if I can beef
it up a little..

My road to the WC began, for me, at age 24, when I had numbness
and tingling of my head. That eventially went away and then in my
late 20s, I had numbness and tingling of my arms and hands.

I noticed it mostly after drinking....and, so, I quit drinking for awhile.
That seemed to help but it came back and then went away again....
off and on...I didn't see a Doc about it. It was bothersome, but
not debilitating.

Then, when I was about 34, I began, what now know, was my first
exacerbation. I suddenly couldn't walk. I wobbled very badly....
looked like a staggering drunk. I went to see my PCP and he
suspected MS, right away, but treated me for Periferal Neuritis,
with oral steroids (prednizone).

I only got worse, so he sent me to a Neurologist and the Neuro
put me in the hospital for tests. My final test, a Myliogram, showed
positive for demylination, so Neuro DX me with MS, at age 36.

I then went into a glorious remission for 17 years. I was able to
lead a pretty normal life, enjoying my marriage, helping to raise
two SSons and our DD, who was 6 when I was DXed.

Then, the year my DD graduated from college and moved to Cincy
for a new job....and, my Mom got a DX of lung Cancer....(see the STRESS?),
I relapsed and went into a doozy of an exacerbation...I was 52
and my glorious remission was over. I went into the hospital for a
5 day steroid treatment and then rehab. Eventially, I made an,
almost, full recovery.

At that time, I used a cane occasionally, but then, I had more
exacerbations and things got progressively worse. I was on
Avonex and then Copaxone,to no avail. I went from a cane
to a walker to a scooter and am still using a scooter in and out
of the house. I progressed to SPMS and then discovered LDN, four
years ago, at 63.

Here I am, at 67, none the worse for wear, and plugging along
in my scooter with an occassional walk with my walker. Like
you Judy, I wish I had discovered LDN, before reaching SPMS, but
at least, I'm staying pretty stable, except for age..

That's my story and I'm sticking to it..

I have been dx for 16+ yrs and am 48 yrs old. I have been paralyzed on two occasions, and did not get out of bed for most of 3 months each time. It took me two years to recover (as much as I was going to) from those two attacks. I was able to walk well after the first one (in 1991), and much less distance after the second one (in 2003).

I have considered a scooter for when I need to shop, or for holidays and such. Normally I can only walk about 2 blocks at a time, but if I am just walking around the house/yard intermittently, I can go mostly all day. Walking and standing tires me out, but since I no longer work, I can usually rest as required.

I went on LDN in early 2005. Back then, I was in terrible shape in many ways, even two years after the last big attack (and several medium ones). I immediately stopped having back-to-back attacks, and within 9 months of using LDN, my EDSS dropped one point. I have remained stable (fluctuations occuring only from infection/way overdoing things) since going on LDN.

There is no scientific evidence at this time, and I doubt there ever will be, but I believe that for the people that LDN works well for, they will stabilize as much as can be possibly hoped for from any drug. As you said, the trick is starting early enough in the disease process.

I hope this upcoming trial in San Fran proves that LDN can be taken with the interferons too, not just Copaxone. I think we will see a change in the course of this disease process in a BIG way, once more people get access to this drug.

Cherie

Thanks Cindy, LeeAnn, Sally and Cherie for your replies. Isn't it amazing that with just five people, our stories are similar but yet different. But for all we've been through, we're still plugging along!!!

Maybe some more people will come along soon. Hmmmm -- three out of five of us are on LDN and pretty stable. Sure hope the word gets "out there", especially among neuros, that this stuff does work. And it's cheap!!!

Goodnight all -- see you tomorrow!!!

I was dxed in 1991, after some motor problems at a horse show scared me into going to a doctor. I was dxed quite fast -- within a month -- via MRI. None of the CRABs were out, so treatment was not an option. By the time they were common, I knew I was PP. I'm not into throwing heavy hitting drugs into my body on a premise of "you never know," so I've never used any of the CRABs. I did try Cytoxan, with no result. But I never thought medical science would come riding to my rescue (I learned its fallibility young), so I'm not fussed by not being on a DMD.

MS moved slowly for me until 2000, when it started speeding up. By Spring of 2005 I was power chair dependent. Today I can no longer drive, handwrite, get up when I fall, dress myself, prepare food, yadda yadda yadda and you get the picture. About 90% physically dependent.

Chris

Once upon a time, I was a hard working a/p clerk, when I started experiencing hand pain, numbness, and hands that fell asleep alot. The neuro shocked and stabbed me, sent me to p/t and then decided, since the tests were not conclusive that I needed carpel tunnel surgery on both hands because I fit the profile. I was also told to find a job where I wouldn't need to use my hands. That was 1990.

Ten years ago, I was dxed with RRMS after again being shocked and stabbed this time for a numb right foot and leg. Hand pain, etc, was a fact of life by then. I had tightness around my rib cage and that warrented an emergency MRI and LP. Following a 3 week headache and 9 tries to draw blood for the blood patch, I wonderously was able to return to work.

Seven years ago I began the abnormally difficult task of proving I was disabled and finally was rewarded with SSDI and became dependent on living with family to make ends meet. That was after spending Memorial and July 4th holidays in the hospital in 1998 for IV Solumedrol and related craziness.

I am now nearly 43, and am in so much pain that I am a crabby *itch alot. I've yet to find anything in life where hands are not required. My legs work most of the time. Although they tend to steer me towards corners and doorways. Bruising is just a sign I got out of bed today. Exertion and heat cause major tinglies in the thighs especially. Fatigue is just another word for no housework today. To look at me you couldn't tell I had MS. I even took up darts so I could be in bars, not drinking, and still fit in with my wobbling and general clummsiness.

I've tried CAR meds (no B) and if it wasn't high fevers and achiness that caused me to stop it was the permanent dents from injecting that did. I took Imuran for 4 years in OH. stopping only for lack of funds. I finally had my neuro put me back on it in 12/06. Now my new doc says there is a lifetime limit for taking Imuran, and I may have to find something else, when all I want is a little relief from pain.

That is my story and I'm sticking to it.

I've only been dx'd for 5.5 years, so I'll give you my mom's experience.

Mom was dx'd originally in 1971 when she had ON a couple months after my birth. She had almost nothing in the way of symptoms for 20 years. In 1990 she started having some numbness in her fingers. She progressed, trying both Avonex and Novantrone, and by 2007 she is in a wheelchair fulltime and at most has decent use of her left hand. She needs assistance with many of her ADLs. She can bear no weight, but she still has a good life, despite all the crap she's been dealt She's an inspiration to me.

Thanks for posting this, Greta. I hope my Daughter, who also has MS,
will feel the same about me. Actually I think she does.