Who's on LDN?

Post by **Arron** » Sun Apr 25, 2004 3:06 am

As Sharonia said, there are lots of people using LDN in Canada, although I have not seen any postings of which doctors will prescribe it. Try the following link for some help:

http://www.voy.com/156761/441.html

Guest · Post by **Guest** » Sun Apr 25, 2004 5:00 pm

Thanx so much Aaron and Sheila!!!

I will definitely check out both websites and I will give you both an update!!

Guest · Post by **Guest** » Mon Apr 26, 2004 8:28 am

Are you on LDN? Yes
How long? 2 weeks
How many mg's? 4.5
When do you take it? before bed

What kind of MS do you have? RRMS

Positive changes since/while taking LDN? noticable decrease in fatigue and increase in stamina, no limp or foot drop, better balance, no pain for most of the day, far less spasticity especially if I walk on the treadmill for 40 minutes regularly

Negative changes since/while taking LDN? first night - sleep disturbance - tossing and turning mostly, since - sometimes vivid early morning dreams

Any relapses while on LDN? no, but too early to have that be news

The million dollar question: Will you continue to take it? YES

guest · Post by **guest** » Mon Apr 26, 2004 12:19 pm

How long have you had MS?

tazzertazzer · Post by **tazzertazzer** » Fri Apr 30, 2004 9:06 am

Are you on LDN? Yes
How long? 5 months
How many mg's? 4.5mg
When do you take it? 9-9:30 PM

What kind of MS do you have (rrms, spms, ppms)? spms

Positive changes since/while taking LDN? Yes

Negative changes since/while taking LDN? no

Any relapses while on LDN? no

The million dollar question: Will you continue to take it? yes

Post by **Arron** » Fri Apr 30, 2004 1:41 pm

tazzer: Thanks for the feedback on LDN! what were the positive changes you've experienced?

gimpybabe · Post by **gimpybabe** » Sun May 02, 2004 6:38 am

Hi!
I need help/advice. I have been on ldn for about 3 wks now. I started on 3mg but I was having BIG problems so I was recently dropped down to 1.5 (split the capsule in half so not too exact). I am still so much worse than I was a month ago.
The first few days I had absolutely no problems but then I started to stiffen up. My drop foot is much worse. My thigh muscle feel about 2 inches long. My right leg no longer bends at will, so I have stopped driving~ temporarily I hope, and the restless leg problem is worse than ever.
I have known about the MS for about 20 years and didn't really have problems 'til '97 when it went to SP now I have balance/gait difficulties and primarily use a walker.
I NEED advice. Should I quit? Am I making myself worse? Anyone else go thru this and get better? I'm married with 3 children to raise, I can't afford to 'screw up' ~Valerie

Post by **Arron** » Sun May 02, 2004 10:24 pm

hi gimpybabe,

sorry to hear of your troubles on LDN. In addition to our forum, you may want to post this question to the Yahoo LDN groups: Spotlight LDN and Low Dose Naltrexone. Go to http://groups.yahoo.com and search for those groups. In general, most people will advise you to stick with the 3mg dose for at least six weeks. Also, make sure that you got your LDN from one of the major pharmacies such as Skip's or Irmat-- it would be helpful if you posted back where you got yours from.

gimpybabe · Post by **gimpybabe** » Mon May 03, 2004 5:12 am

Hi Arron,
Thanks for the reply. I got my first batch of 3mg capsules from a local compounding pharmacy but I have ordered my next script thru Skip's. I talked with Skip about it and he believes that their procedure and filler sounded good but I'm going to switch just to be safe. ( by the way Skip is very nice and helpful, considering I wasn't even a customer!)
I was wondering if I should just stay at the 3mg and tough it out, but Dr.Scott changed me to 1.5.
I posted on this site because it was easiest ~ no passwords...registering...I'm not too much of a computer wiz!
I'm still stiff today. It hasn't gotten any better with the new dose. Hopefully tomorrow.
Have a great day!~Valerie

Sally · Post by **Sally** » Tue May 11, 2004 8:15 pm

Hi Everyone,

I just though that I would up-date a little. I haven't been here since Dec '03, I think. I'm on LDN now 13 months and am still doing well. No Progression, no new symptoms. I am just getting over a flare of old symptoms, though.

A lot has happened...My Dear Husband passed away in Jan '04, which was a great sorrow and stress in my life (still is). My 33 yr old Daughter was DX with MS, and is now also on LDN....hopefully her MS will be nipped in the bud.

I feel that LDN really got me through this stressful time in my life. I really don't think I could have made it through as unscathed as I have, without the help of LDN., and my wonderful family and friends.

I have been reading all your posts, and I see that most of you are doing well on LDN. Many of you are new to LDN and are having a few initial problems, as I did. Hang in there...give it time (at least 6 mos) and I'm sure you will be happy that you did.

Good wishes to you all.

Love
Sally

Post by **Arron** » Wed May 12, 2004 9:40 am

wonderful post-- thanks Sally. We're sorry to hear of the passing of someone so important to you, but are likewise glad that you have been so strong (and doing so well MS-wise despite the strains). Please visit us more often, the community really benefits from members like you.

Guest · Post by **Guest** » Mon May 17, 2004 3:34 pm

I have just started on ldn and wanted to share my positive response - it just feels as though my life has re-started. Yes, I still have some symptoms but the fatigue has lifted and I have joined a gym because I really want to try and re-gain some stamina and strength after my last relapse (6 mths not working and feeling so depressed). Not sure if this will help anyone else but I wanted to pass on my experience. My GP would not prescribe so I went direct to Dr Scott and am on 3mg dose.

SallyC · Post by **SallyC** » Mon May 17, 2004 8:45 pm

Hi Guest,

I noticed that you mentioned Dr Scott writes your script for LDN. I Think that I was Dr Scott's First LDN Patient. I added his name to the LDN Docs list on the LDN site and also The Prescription Center (both in Wisc.)

It is great to see so many people Using my Doc and Compounder. I noticed that Dr. Scott has raised his consult price too...the little rascal...lol

I hope you do well on your ldn, as I have. Good luck to you.

Sally C

TampaMom · Post by **TampaMom** » Thu Jun 17, 2004 10:07 am

I hope this is the right place to reply to post about LDN users and their experiences!

Are you on LDN? - YES
How long? - 3 weeks
How many mg's? 3.0
When do you take it? bedtime - usually between 11pm - midnite

What kind of MS do you have (rrms, spms, ppms)? RR or spms
Positive changes since/while taking LDN? YES

- once asleep, sleep soundly, wake up easier in the AM, more energy and sense of well-being in the day. haven't noticed any decrease in my neuropathic pain tho

Negative changes since/while taking LDN? NONE

Any relapses while on LDN? no - but it's been too short a time to tell

The million dollar question: Will you continue to take it? YES

cleo · Post by **cleo** » Mon Jun 21, 2004 6:58 am

Are you on LDN? Yes
How long? Three weeks
How many mg's? 4.5mg
When do you take it? Around 9pm

What kind of MS do you have (rrms, spms, ppms)? PPMS

Positive changes since/while taking LDN? Better bladder control, less constipation and less fatigue

Negative changes since/while taking LDN? None

Any relapses while on LDN? No since I have PPMS

The million dollar question: Will you continue to take it? Absolutely

This Is MS Multiple Sclerosis Knowledge & Support Community

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How long?

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update

Response to Guest who's Dr is Dr. Scott

responding to survey of LDN users

LDN Survey Answers