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-   -   LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

FluteMaker 10-12-2008 08:37 PM

well folks, here i am. one month in. i started with an official DX of deff relapsing remitting multiple sclerosis back on 9/8. i started on the LDN on 9/9. now, a fair full month later on 10/12 im proud to report that ive had no new SX or even worsening existing SX.thas one down eleven to go. ive been given one year clean as the standard for deciding if im in a full remittion and not just having a bunch of good days strung together. so i have to go one full year with no new SX and no new liesion activity on an MRI and my neuro will be happy. the new script he wrote for my LDN has enough refills for that year and we;ll evaluate things next october.
but i gotta tell ya, im feeling good.ive been back to work for a few weeks already but im getting close to 'pre onset' hours and im close to asking our head dog trainer if i can have my spot on the crew back

marion06095 10-13-2008 07:55 AM

Thanks, Twink. I guess I am still at the stage where I am flabbergasted by the improvement, so y’all are probably going to have to put up with my incessant cheeryness.

:yahoo:

Tree55 10-13-2008 09:12 AM

Quote:

Originally Posted by marion06095 (Post 387251)
Thanks, Twink. I guess I am still at the stage where I am flabbergasted by the improvement, so y’all are probably going to have to put up with my incessant cheeryness.

:yahoo:

Your cherriness is contagious. I wish you continued improvement.

lady_express_44 10-13-2008 10:02 AM

Quote:

Originally Posted by marion06095 (Post 387251)
Thanks, Twink. I guess I am still at the stage where I am flabbergasted by the improvement, so y’all are probably going to have to put up with my incessant cheeryness.

:yahoo:

Are most of your "problem" lesions in your spine, marion? Just curious because I had considerable symptom improvement too, and mine are.

Cherie

lady_express_44 10-13-2008 10:07 AM

Quote:

Originally Posted by FluteMaker (Post 387113)
well folks, here i am. one month in. i started with an official DX of deff relapsing remitting multiple sclerosis back on 9/8. i started on the LDN on 9/9. now, a fair full month later on 10/12 im proud to report that ive had no new SX or even worsening existing SX.thas one down eleven to go. ive been given one year clean as the standard for deciding if im in a full remittion and not just having a bunch of good days strung together. so i have to go one full year with no new SX and no new liesion activity on an MRI and my neuro will be happy. the new script he wrote for my LDN has enough refills for that year and we;ll evaluate things next october.
but i gotta tell ya, im feeling good.ive been back to work for a few weeks already but im getting close to 'pre onset' hours and im close to asking our head dog trainer if i can have my spot on the crew back

My new neuro allowed me to "try it" for 9 mo, but it wasn't her who was rxing it anyway. My doc made me go month to month with my rx, and after the 9 month mark, started rxing it on an annual basis. Even now, 3 1/2 yrs later, I doubt he "believes" the LDN is helping me at all . . . just that as long as I am happy, he is happy. ;)

Cherie

marion06095 10-13-2008 01:51 PM

Lady, I have never had an MRI of my lower spine, but my cervical spine is clear. I am told that the lesions in my brain are typically MS in nature, and are too numerous to count.

Kitty 10-13-2008 01:51 PM

I had my Neuro appointment today. He went over the films with me and showed me ones from last April and the ones from last Monday.

There was an existing lesion that was enhanced via the dye on the most recent one. It was not enhanced last April. It's pretty large and he said it is a T2 lesion. He did tell me that my sx are being caused by existing lesions (no new ones thank goodness). My balance issues and vision issues are caused by this lesion which is on the left side of my brain, thus my right hand is numb.

I need some opinions. I've been taking LDN since 9/1/2008. Just a little over a month. Do you think I've been taking it long enough for there to be any significant improvement in the progression of my disease? Should I continue to take it? I definitely feel better when I do.

The Neuro is pushing hard for Ty and I just do not want to go that route. Plus....come the end of December I will have no insurance anyway so that sort of takes care of that for me! :rolleyes:

My gut says to give the LDN a chance.....this lesion could have been enhanced even before I started the LDN and would have caused me problems whether I started LDN in September or not.

I think he was a little irritated at me that I didn't want to begin the Ty but like I told him I have no way to pay for it after December. Like all doctors they really don't want to discuss finances with you. :rolleyes:

So....that's what it is for me. I'm leaning towards just continuing with the LDN and see what happens over the next 6 months. What do ya'll think?

SallyC 10-13-2008 06:34 PM

You answered you own question, Kell....I'll second the motion....Stay On Your LDN.:D

FluteMaker 10-13-2008 06:59 PM

theres no guarentee that the ty will do any better for you than the ldn, thats what gets me about how hard my neuro was pushing for me to start the copaxone. the copaxone only says it can, not will, shorten exacerbations in frequency and duration.
same thing with the LDN, the big difference is i can afford the LDN. and i certainly think it was the LDN thats helpped me get this far.its been suggested to me that my recovery to this point was just the natural run of the illness and not the LDN, but the same thing could be said of any of the crab drugs. at least they have an idea of how the LDN works

tante 10-13-2008 07:38 PM

Quote:

Originally Posted by marion06095 (Post 387251)
Thanks, Twink. I guess I am still at the stage where I am flabbergasted by the improvement, so y’all are probably going to have to put up with my incessant cheeryness.

:yahoo:

I love it, and hope it never ends!


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