Re: [Spotlight_ldn] New member

[Guest guest]

Hi ee,

Welcome to the group. I've been on the LDN for about 15 months now and so

far so good for me. I approached 2 neuros before I got the message that they

were not gonna " go outside the box " with any MS treatment so I decided that

I would try to find a forward thinking MD. I found a really great

endocronologist and he took one look at the LDN and said... " why not " . It is

so completely harmless at such a low dose that he didn't see the harm if it

was something that I wanted to try. He seems to be very into alternative

forms of treatments so I had no problem convincing him to prescribe it for

me. He has since put his other MS patient on it. I saw him last night for a

B12 shot and he told me this. Said she is doing better and her bladder

control seems to be a bit improved. There are several compounders that are

compounding this for many MSer's. There is even a list of a few of them on

the LDN site. I am going to write and recommend Skip to be added to this

list as well. He is my compounder. I don't even bother to apply for

insurance coverage because my monthly co-pay is $50.00 and it is only about

$25.00 a month. Hope this helps you. Joyce.

From: " ee "

Reply-Spotlight_ldn

To:

Subject: [spotlight_ldn] New member

Date: Mon, 28 Jul 2003 21:09:07 -0700

Hello,

I joined this list to learn more about LDN. Afetr 15 years, I finally got

a halfassed diagnosis. I have never had lesions on my MRIs, but for 15

years I have had fairly classic relapsing remitting MS symptoms. The attack

I had in 2001 left me with a slight foot-drop, and then this January I got

an attack.. and it never left. (or it left but it forgot to take all the

problems WITH it!)

I now walk with a cane, or forearm crutches, depending on how far I am

going. I occasionally lose balance, and of course I'm tired a lot. The

further I walk, the more my legs drags, too.

Because of the missing lesions, the MS specialists I saw wouldn't gibve me

a diagnosis. A blood test my internist gave me (MAG IgM antibodies) showed

a demyelinating auto-immune disease going on, by the levels it showed to be

MS. ANd taking into account the pattern and my age, sex, race, origin,

etc.. it's pretty apparent it's MS. So this last week, my internist

recommended Avonex to me.. but now that I can finally get a drug.. I'm not

so sure I WANT it.

The side effects, the success rate, the cost, the trouble, the effect on

the body... it all seems to be worse than the MS. As my doctor said, " It's

not a cure.. it just delays the inevitable. " (Thanks for the sugar-coating,

Doc!)

I am interested to know what kinds of results you, who are taking LDN, have

had. What did your doctors say when you asked for the Rx (or did THEY

recommend it?) Where do you get it? Does you insurance cover it? (I hear

it's quite inexpensive anyway).

I appreciate any information you can offer.

As for me, I'm ee, 41, from California (not originally). Married 20

years, 2 teenage kids and a bunch of pets.

Thanks in advance.

ee

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