Re: Initial months on LDN & symptom increases

[Guest guest]

In a message dated 11/20/2005 10:06:58 PM Central Standard Time, teaser1216@... writes:

For you long time LDN users: Your thoughts on my experiences thus far?

Thanks in advance for any advice you may have.

Desinie

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Desinie,

If you've got MS, the burning may or may NOT go away. I've been on 4.5mg LDN w/ Avicel filler for two years. My MRI shows no progression, but I'm learning that the MRI really doesn't mean alot. My MRI and my symptoms don't look like they belong to the same person, according to my Neuro. I had SOME symptom improvement (better bladder control, no L'Hermettes, less constriction pain) but I still can't stand or walk. Believe me...it can get MUCH worse. Just stick with it.

Marcie

[Guest guest]

Hi Marcie, Yes, I do have MS, diagnosed finally in 1999 but had my first attack in 1992 which was then misdiagnosed as Lyme disease. Went into a long remission after becoming pregnant then breast feeding for a year. Im sure that had something to do with my long remission. Symptoms returned but were more MS like in the beginning of 1999 and was diagnosed after an MRI of the brain and a spinal tap. Thanks for the encouragement, i will stick with it. I'm not one to give up easy. All My Best to You, Desiniemarciemjm@... wrote: In a message dated 11/20/2005 10:06:58 PM Central Standard Time, teaser1216@... writes: For you long time LDN users: Your thoughts on my experiences thus far? Thanks in advance for any advice you may have. Desinie ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Desinie, If you've got MS, the burning may or may NOT go away. I've been on 4.5mg LDN w/ Avicel filler for two years. My MRI shows no progression, but I'm learning that the MRI really doesn't mean alot. My MRI and my symptoms don't look like they belong to the same person, according to my Neuro. I had SOME symptom improvement (better bladder control, no L'Hermettes, less constriction

pain) but I still can't stand or walk. Believe me...it can get MUCH worse. Just stick with it. Marcie

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[Guest guest]

Desinie, a couple of things:

1. Not everyone experiences symptom relief on LDN--the main reason to take

it is to prevent progression. I've been taking it for almost two years now

and all I have to report is less bladder urgency. It hasn't helped my legs

at all.

2. Quite a number of people, myself included, cannot tolerate 4.5. mg.

According to the LDN website and Dr. Bihari, it is fine to remain on 3 mg if

that's what works best for you. Have you seen the website? The address is

www.ldninfo.org.

[Guest guest]

Thanks for your reply , . Yes i've read all of the www.ldninfo.org. website. I've read lots here too and have been a member for around a year it just took me that long to convince my neuro to prescribe it. I guess I just wasn't expecting any new symptoms or flare ups of old to pop up. I'll gladly settle for it stopping disease progression though and I'm quite hopeful for that. All My Best, Desinie Landau <CLANDAU@...> wrote: Desinie, a couple of things:1. Not everyone experiences symptom relief on LDN--the main reason to take it is to prevent progression. I've been taking it for almost two years now and all I have to report is less bladder urgency. It hasn't helped my legs at all.2. Quite a number of

people, myself included, cannot tolerate 4.5. mg. According to the LDN website and Dr. Bihari, it is fine to remain on 3 mg if that's what works best for you. Have you seen the website? The address is www.ldninfo.org.