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!!!