YOU, Sally, and others on LDN. I completely understand being cautious but the article fell short for me when it failed to mention just HOW small the studies have been and that there are tons of anecdotal reports from people who have reported that it has indeed helped them with other things he implies that the drug will not do by virtue of the studies. As well as the worsening of pain thing. Empiricism is fine -- it's GREAT and also necessary -- but put it into perspective.

I hope to be able to change my mind one day and sing his praises more passionately, but Bowling has also failed to wow me on other occasions.

its about 6 months in for me. i started LDN back in september of 08 and im derned glad i did. i dont think i felt this good before i was on the LDN . i just had my most recent MRI back on 12/30/08 and a visit to my neuro on the 23rd of this month. no progress since my MRI of 08/26/08. no changes at all really. plus when being evaluated for edss in august i was marked at 4.5 to 5.
in october it was changed to less than 1. monday i was evaluated again and the one thing that messed me up back in october wasnt a problem for me this time...... that heal to toe walk thing......i did better than my wife.
my neuro is still kinda hot to get me on imuran but im thinking not. even if it was only one person in the studies who developed lymphoma, thats not a potential side effect im ready to deal with. rare though it may be ive already won the MS jackpot. some 400k people in america....5mill +/- worldwide out of a population of 6 billion +/-......not good enough odds for my tastes.ill stick with the LDN a while longer. one thing i have been looking for though, has anyone compiled any statistical data of people on LDN?statistics like how long theyve been on it and if theyve progressed at all.

one thing i liked about the anecdotal claims Vs clinical evidence is that in clinical trials the results are usually interpreted by someone conected to the people paying for the study. by someone who has something to lose.and only include maybe 500 or so people chosen by those same check writters.
anecdotal claims are from people with nothing to gain or lose and are from real life experiences.

my next medical trip is going to be to the dentist/oral surgeon. thanks to me someones kid wont have to settle for state school next year. i was to a dentist today and had a full seriese of dental xrays done.... ive got one raging abcess(threatening my sinuses),4impacted wisdom teeth, 2 teeth broken off at the gums and atleast 2 more needing root canals.the wisdom teeth are moving forward and putting stress on the teeth in front of them,those teeth are getting shoved forward and putting stress on the ones in front of them,and so on and so on and theyre starting to crack. not a good thing all around.
the suckiest part is i have to do two weeks of antibiotics for the abcess before they can touch the teeth that need to come out. god i hate dentists

There have been a couple of survey's done, Flutemaker:

http://www.ldners.org/surveys.htm

Cherie

My heart goes out to you Flute, for the Dental problems.. Do what I did and have them all pulled...no more worry, no more infections.

So, eight days ago I had my telephone consult with the doctor who writes my LDN Rx. He told me he’d fax Skip’s right away. Long story short (Murphy’s law rules!), I have been without LDN for 5 days. I hope the problems were cleared up between the doctor, Skips and the delivery method, but what amazes me is how bad my MS symptoms have become. I ache! I had forgotten how badly I ache. My tremors are back, and I have lost most bladder control. I suppose it is possible that I have a bladder infection coming on, but I’m betting that it is the lack of LDN that is doing it. I guess time will tell on that score. I really expected to receive the Rx today. Sigh. Looks like I am going to have to put up with this at least until Monday night. Sigh.

And yet life goes merrily on.

Yep, same thing happened to my DD when she was out for awhile. I always call my LDN Doc, two weeks before I'm out, just to cover any mishaps....they happen..

I hope you get back on, soon..

Hi Marion,
I am sorry to hear that you are in pain and perhaps a bladder infection is starting. That stinks! I hope you get your LDN in the mail soon.

They have a bladder infection test kit in all local drug stores. You might want to try that method. It's like taking a pregnancy test. I don't know how reliable they are but worth a try. You may need anti-b's from your doctor. I hope you feel better soon.

Wow, Lady, thank you! I didn’t know that. I know - what rock have I been living under, eh? I was very symptomatic this morning, so I ran right down to the Pharmacy and got two UTI test sticks. It looks like I don’t have a UTI, so I am starting to suspect it is an MS (bladder muscle weakness or neuritis or something) thing. My symptoms have backed off a bit since this morning. I guess I’ll just have to wait and see if I am still having problems tomorrow. If I am, I’ll do another UTI test. I really hope that this new symptom will go away when I get back on LDN. I see that as the shortest distance between me and a resolution.

((((((((((Marion))))))))) Feel better soon..

Is your LDN coming soon? I hope, I hope.

I have a question for all the veteran LDN users. How long should I take LDN for it to be considered giving it a "fair chance" to work? I've been taking it for six months now.