Re: Want to start LDN

[Guest guest]

Hi there Blueswede,

Good for you on not giving up. That is what is needed in all this. If I

would have just given up after speaking to two neuros I'd be on one of the

ABC's right now. Not sure where my assertiveness in this regard came from

but I was just very determined to try something that I had faith in. The way

I look at it, doctors work for us, we don't work for them. Bout time we all

took control of ours lives I say. I think we all just need to realize that

we certainly DO NOT need a neuro to get this low dose Naltrexone. I have

given up on neuros for myself right now. I had my Naltrexone prescribed for

me by a endocronologist who is really into alternatives and is not afraid to

try things that are " out of the box " so to speak. The neurologists are not!

My question to you is this, how long have you had the sleep problem. I had

the same problem about 2 years ago?? It was temporary, and I attribute it to

the MS but it lasted just as long as any MS related problem that I've

experienced and I'm fine now. Let's hope that is the case in your regard

with your sleep problem. I am confident that you will find someone to

prescribe the Naltrexone for you. A smart doc will realize that there is no

risk as the dose is so so low. My doc called it almost homeopathic, it is so

low. Just try to find a doc who is receptive to alternatives, believe me,

they are out there...good luck to you and keep us posted. Let us know if you

need any further help...compounders...etc. Joyce.

>From: " blueswede06 " <blueswede06@...>

>low dose naltrexone

>Subject: [low dose naltrexone] Want to start LDN

>Date: Sat, 26 Apr 2003 04:38:24 -0000

>

>I have been reading up on LDN for about six months now. Was

>diagnosed as probable MS about a year and a half ago. Six months

>ago, after another brain MRI, my neuro said positive MS. He has

>talked about starting conventional (ABC) therapy. When I asked

>about LDN, he had no knowledge of it. I gave him the info from the

>LDN website, he did a quick glance and said " NO " . Only if ABCs did

>not work or I could not tolerate them would he even think of it.

> I told him ABCs are not an option, I will not try them. High

>cost, low success rate, and questionable quality of life. As I am

>not rich, I must continue working, and flu like symptoms 3 days a

>week aren't going to cut it. I talked to my GP, he referred me back

>to the neuro, didn't want to have any of it.

> I emailed a group member on this site, and he gave me the name

>of the doctor that prescribed to him. I called today, but the

>office was already closed. I will call again Monday. Neuro has me

>on neurontin for the pain, but when I take the full dose which stops

>the pain, the fatigue is unbearable. I hope the LDN will stop the

>progression of the MS, and hope I get the benefit of less fatigue.

> If it helps with sleep, I should see some real benefit, as a

>good nights sleep is an exterme rarity. I'm always tired, just

>don't sleep well, and rarely more than 6 hours at a time. If I go

>to bed early, I wake up early, if I go to bed late, I still wake up

>early. No matter how hard I try, I can't get 8 hours, my body won't

>allow it. Will post with my progress with obtaining LDN..

>

>Everyone just keep pluggin along, don't let the MS get you down. If

>LDN is the answer, I think we will all soon know. There is always

>hope. We are stronger than MS...............Blueswede06

>

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[Guest guest]

If you have a hard time finding a doctor that will prescribe for you,

try finding a pharmacy that compounds it and ask them who in the area

does prescribe it...and go from there!

CindiNC

wkendz 32 wrote:

>

> Hi there Blueswede,

> Good for you on not giving up. That is what is needed in all this.

[Guest guest]

I started LDN a little over a week ago. I have Parkinson's and share

your sleep disorder. Even Ambien and Valium did not help much. I am

sleeping better now. I've seen Doctor Bihari in person and have

renewed hope. I know another person who (16 years ago) was told that

she would die. She went to Dr. Bihari: She says that he saved her

life. Sixteen years later, she looks quite healthy to me.

Don't listen to everything neurologists tell you. Some of them are

idiots (or even worse, too arrogant to consider that the patient

might have something of value to listen to) -- I was misdiagnosed for

4 years by several neurologists, the last of which I walked into his

office telling him that I believed I had Parkinsons. He would not

listen to the detailed information I had for him. He flatly said

that I " definitely do not have parkinsons " . A few months later, a

visit to Columbia and a PET scan confirmed how little he knew.

Doctors often guess pretending they know....they often do not, and

the good ones will tell you that.

Keep the faith, take Coenzyme Q-10 with vitamin E, and listen to

classical music.... I've found these (with regular exercise) to help

immensely.

Jeff

P.S. Pharmacy in NYC via doctor Bihari is cheap and sends by US Mail

for free. My prescription plan even covered it.

Good luck!!!

[Guest guest]

I started LDN 4 days ago, only thing to report was insomnia a bit the

first night, then solid sleep thereafter. No other effects to report,

however I will def. be able to tell as my walking has gotten noticeably

worse over the last month, and they aren't even encouraging me with the

ABCs as I have primary progressive MS and there is NOTHING for that

diagnosis. They wanted to try me on steroids to see if they helped and if

they did they would change their diagnosis to RR-MS so insurance would pay

for the ABC drug! Now to me that seems like pretzel logic....

I'll report back to this group any progress I see with LDN and my

walking... I requested a 3 mg/day dose btw.

On Sat, 26 Apr 2003, blueswede06 wrote:

> I have been reading up on LDN for about six months now. Was

> diagnosed as probable MS about a year and a half ago. Six months

> ago, after another brain MRI, my neuro said positive MS. He has

> talked about starting conventional (ABC) therapy. When I asked

> about LDN, he had no knowledge of it. I gave him the info from the

> LDN website, he did a quick glance and said " NO " . Only if ABCs did

> not work or I could not tolerate them would he even think of it.

> I told him ABCs are not an option, I will not try them. High

> cost, low success rate, and questionable quality of life. As I am

> not rich, I must continue working, and flu like symptoms 3 days a

> week aren't going to cut it. I talked to my GP, he referred me back

> to the neuro, didn't want to have any of it.

> I emailed a group member on this site, and he gave me the name

> of the doctor that prescribed to him. I called today, but the

> office was already closed. I will call again Monday. Neuro has me

> on neurontin for the pain, but when I take the full dose which stops

> the pain, the fatigue is unbearable. I hope the LDN will stop the

> progression of the MS, and hope I get the benefit of less fatigue.

> If it helps with sleep, I should see some real benefit, as a

> good nights sleep is an exterme rarity. I'm always tired, just

> don't sleep well, and rarely more than 6 hours at a time. If I go

> to bed early, I wake up early, if I go to bed late, I still wake up

> early. No matter how hard I try, I can't get 8 hours, my body won't

> allow it. Will post with my progress with obtaining LDN..

>

> Everyone just keep pluggin along, don't let the MS get you down. If

> LDN is the answer, I think we will all soon know. There is always

> hope. We are stronger than MS...............Blueswede06

>

>

>

>