out of the woodwork/off topic

[Guest guest]

"Off Topic"

Basically an update on how I've been Since I've started taking this

stupid little pill. <grin> Beats the injections hands down!

Hey Lady!

Hmmm....Dec11th '03. First month at 3mg, then wanted to try 4.5mg

not to see if there would be any "more" improvement, but rather to

see if it, feeling well, would last longer. It 'seemed' to (the feeling of

wellness) wear off in the late afternoon, early evening. Sometimes

it seemed I would be a bit 'jittery...similar to a guitar string someone

has really twanged..:-) Or, a tuning fork. And really exhausted.

Anyway, guess I'm one of the oddballs, in that my body seems to

like the 4.5mg better than the 3mg. Whatever works...works.

As far as how I'm doing. Ups and downs, especially if I'm stupid and

try to 'push it' too much. "I want it NOW!!!" sigh. Am learning to take

the slower, scenic route, but I do feel better. Still have the infrequent

fatigue, but as long as I keep busy, I can fight it off. If I make the

mistake of sitting in my "easy-chair" then I'm toast for a couple of

hours and can't wake me. Not until the brain says it's ok.

So, needless to say, I stay out of that chair as much as possible.

Seems to be more ups than downs. And even if something comes

along to knock me back a step or two, pre-ldn, it would have put me

in a bed for a couple of days, when now, it's just a couple of hours.

Still exercising, Tai-Chi, now with stickfighting, Karate, and Sword. :-)

Looking into buying a BowFlex as SammyJo swears by it, and when

we went over to JT's, saw hers and her husbands. Nice piece of

equipment, but expensive, so looking at the payment plan. :-(

Can stand for quite some time now. Used to be 15-20 minutes and

then the tops of my thighs would start to tingle, then electric pain,

then numbness, and if the left leg went numb below the knee, I fell.

Now can do a couple/few hours, even go shopping without the

numbness setting in for quite some time.

No more w/c for the distances. No more cane for the short one.

No more wall-walking down the hallway. Can carry on a conversation

without slurring all my words, and sometimes, so I've been told...I even

make sense. <grin>

All of the pain went away in the beginning, then returned but very mild.

Most of the time I forget it's even there it's that mild. There are a few,

but far in-between times that it reminds me it's in hiding. I'm talking

about the burning/scalded feeling over most of the body. The stabbing

pains have left, and only once in a great while does a deep but faint

ache in the left tricep remind me it's there.

Burning eyes are gone. Still have the double vision, in each eye.

Sometimes it goes away for a little while.

Rarely do I get any dizziness or vertigo. Still see "spots" at times.

Tiny pinpoints like a tiny drop of oil in water, makes it 'different, and

a ??rainbow?? type of color I guess. soapbubble! Little tiny ones

that just pop up every now and then.

For some of the newbies out there, Hi, still consider myself a newbie

as well. Lot of good people here willing to share their information,

knowledge, and experiences. All you have to do is ask.

Briefly, my story on how ldn has helped me...from the beginning now,

which was the 11th of December, 2003. Thursday night(11th) took my

first dose, and now we have Friday morning...how I felt.

Day1 Fantastic

Day2 Pretty good, not as well as yesterday.

Day3 Ok, must have a bug, or getting a cold??

Day4 Oh God, I've got MS, someone...please, just shoot me.

Day5 Ok....early afternoon..pretty good!

Day6 From then, up to the present, it seems I've leveled out some-

where in between feeling ok, to pretty good. Have not had the pleasure

of experiencing that feeling of the first day. But I'll take what I've been

given, which most of the time, ain't so bad! Mostly it's toward the

pretty good side of the scale.

The first six months every time I "felt" something that seemed to be

going 'bad', I'd freak out a little bit. Come to the realization, that I am

better than I ever was on the CRABS. My 'worst day' on ldn is by far

and away, much better than my 'best' day on the interferons. So I take

the little bumps in the road with a grain of salt, sit back and wait for it

to pass. So far, all the bumps have gone away.

LOL You asked Bren, so there it is...Hope everyone will forgive the

length of this, but it was time to 'check in' again with an update, and

a wish for everyone to hang in there, and hope you're as fortunate

as it seems I've been with this treatment.

Everyone, please stay plugged in. Keep the advice coming. We all

need it. I have friends with PD, and Alzheimer's that I've passed the

ldn information on to, as well as Fibro and Cancer. I've told them of

this site and a lot of the others you all have been kind enough to

provide with all the searches going on.

Thank you to everyone for your encouragement, and good advice.

(and patience in putting up with this) Wishing you all the best!

I'll slip back into my Cave now....

Have a Great Day everyone.

Jim(rrms)

Stay in touch !

later