Soooooooo true, Cherie.

We had Thanksgiving dinner for eight at our house as usual. In previous years, I wasn’t much help with entertaining, and Gerry did a wonderful job of picking up the slack as my condition deteriorated. This year, however, I did much of the work, and my hubby is amazed by my stamina. My guests were also really blown away by my diminished MS symptoms. It felt wonderful to be a hostess again.

Thank you, LDN!

Okay everybody. I know what LDN is, but what little I've heard is not good. When did you decide to go on it, did you ask your doctor or did he suggest it, what symptoms does it help??????

Doxie

What negative things have you heard about LDN? I'd be interested to know your source because I've been hard pressed to find anything negative about it anywhere....hard as I've looked!! Of course, if it was coming from your Neuro that doesn't surprise me........they don't like anything that challenges their "supreme knowledge of everything neurological"....

I decided to start taking it after reading all the posts in this thread.....and no, my doctor wouldn't even listen to me about it, so I found a way to get it without his blessing. It's not a money making med for the pharmaceuticals so most Neuros won't even research it...even if their patients ask for it.

It's been a huge help to me...helps me with most all of my MS sx, especially the fatigue. I take a Provigil maybe once a week now...and only take 1/2 of a capsule whereas I was taking one or two whole capsules a day before! It's helped with my cognitive abilities, my balance, my tremors. It's just helped me so much all around.....I cannot imagine not being able to take it.

I can't imagine how you could have heard only "not good" things about Naltrexone, so I'm wondering if perhaps you have LD Naltrexone confused with Novantrone. Novantrone is a somewhat risky chemo drug that is approved for advanced or particularly aggressive MS, whereas LDN is very low dosage of opioid antagonist, used off-label for all categories of MS.

I decided to go on LDN about 4 yrs ago, and it took me 6 months to convince my doctor. I heard about it through a friend, who's 13 yr old son had very aggressive MS. She had tried him on all the CRABs before she finally resorted to LDN ... which she had heard about on the internet. He quickly stabilized, and was able to get back to school. He had been on about 2 yrs at that point.

I didn't go on LDN for symptom improvement, and really never expected any either. I had been on a downhill slide for several years, especially the last two though, so I just wanted to try something to hopefully reduce relapses and slow the disease process. Within a week though, the relentless spasticity pain I'd been living with for that two years was gone, as was my claw hand (which had been getting worse for 5 yrs), improved bladder/bowel control, cogfog, walking/balance, etc.

Historically, most doctors and neuro's wouldn't "suggest" LDN to their patients because it is not a mainstream disease modifying treatment (DMT). Back when I was first looking for it, not many doctors had experience with it for MS, so they were reluctant to rx. Now-a-days though, almost every doctor has heard of the use of it for MS, many will rx, and some even recommend it (with or without clinical trials proving it's effectiveness).

Cherie

I forgot to tell my little story about my foggy-headed discussion with the anethesiologist the other day, just prior to my surgery . . .

I was laying on the table, just prior to being put out (but they had clearly already given me 'something' that made me a little spacey ), when the anesthesiologist asked me, "How long have you had MS?", to which I responded "18+ years".

(BTW, does anyone else find that hospitals, nurses and doctors make a BIG fuss about people with MS?? )

He commented that I seem to be doing well ... compared to many people he had seen previously ...". I know, I 'look so good'.

Then he says, "so why do you use Naproxen so often?".

I told him that I "use it for pain".

He responded "I've never heard of anyone being rx'd it that regularly for pain before. ".

I said "It doesn't work for the neurological pain, but it does take the edge off for other pains I get (due to compensating from the neurological pain)".

He said, "hmmmm ... that's a first ... daily Naltrexone for pain".

It was at that point that the lightbulb went on that he was saying Naltrexone, not Naproxen. I quickly corrected myself and told him I use Naltrexone "off-label for MS". I told him that it was not an approved med for that purpose, but that it had been keeping me stable for 3 1/2 yrs now.

His immediate comment was, "Unfortunately there isn't any financial incentive in undertaking large clinical trials to prove some of the existing generic drugs work on diseases . . . ".

I've always thought that myself . . . but was a bit shocked to hear that coming from a doctor who never even has more then a 10 minute "relationship" with ANY of his patients!

Cherie

Hi Doxie. I hate to say it, but if you go back and read this Thread, you will find all your answers.

Also do look at some of the Videos in the link that Larry has provided, at post #649.

Good luck to you..

Wow...I am shocked too. That makes two doctors admitting that this week. The Chief of Neurology in SLC told me the same thing last week. He actually said that it would take 1/2 billion dollars to do human trials on LDN. And since there is no money to be made, it will never get done.

This last week has been nothing short of incredible. I am loving the relief from LDN. I hosted Thanksgiving dinner for 13 people and am living to tell the tale!

I'm a little bit tired today, but have thoroughly enjoyed being able to keep up with the festivities!

I am so thankful for LDN.

Brenda, I know what you mean. We had 8 for Thanksgiving dinner, and I was able to fully participate in the house cleaning before, the meal preparation, and the clean up afterwards for the first time in at least ten years. I am certainly going to kick back for a couple of days now, though, because I really did push a little bit too hard. I am simply amazed at how much more useful I am able to be.

I'm so happy for ya'll!! LDN is so simple to use.....and so affordable....no wonder the Neuro's don't want to promote it! It might just put them out of business! Not really, but I haven't had to put a call into my Neuro in a loooong time!