Thanks, Sally & Cherie.

I requested the lowest dosage (1.5 mg.) b/c of something I read about LDN + hypothyroidism (which I take Synthroid for). I'm not worried about liver damage either -- and neither was the doc, but he's just being careful, I guess.


Hey, I just got off the phone with Skip of Skip's pharmacy! He was very friendly and we talked about 5 minutes.

I told him I had MS and wondered aloud why the insurance companies wouldn't be more than happy to pay this tiny amount for LDN, rather than the BIG bucks for Tysabri. He responded that its possible the insurance companies have investments with the drug companies, so it's purely a business interest. Not necessarily what's best for the patient.

He said, "That's why we don't do business with the insurance companies."

I've seen him called "Dr. Skip," so asked if he were a medical doctor. He said, "I'm a Pharmacy DPHD -- I actually earned my degree!"

Not exactly sure what he meant by that, but I thanked him and will wait for the pharmacy to call me once they get the prescription from my doc.

Erin, I'm sorry, but I can't remember what parts I highlighted! I left the paper with my doc. Sorry!

I was concerned that he may not read the whole thing, so just highlighted a few points to help make my case for an LDN Rx. It worked!!! Yippee!

Hmmm... That means I have to do my own reading and highlighting. Good thing I bought new highlighters the other day (for highlighting directions on crochet patterns)

Do you remember what link you used to print out the information?? I'm afraid that if I print off info from the wrong website, that the neuro wont take me seriously on wanting to try LDN.

I wonder if I can find information about the clinical trials for LDN and Copaxone. Or an actual medical journal paper that talks about LDN.

Erin,

The main reason that doctors don't rx this is that they don't know anything about it. They are too lazy to do their own reading, or they would find out just how harmless this small dosage of drug (with an extremely long and safe history) is.

My doc made me do up a "risk assessment", which included documenting the dosage required, potential side-effects, an assessment of it against the NMSS "Danger Signals" and "Look before you Leap" considerations of CAMs, etc., before he would rx it. It took me 6 months of research and documenting (I was NOT well at the time) before I got it all together, but my rx was sitting at his reception 2 hrs after I dropped it at his office to read.

I will PM you what I wrote, although it may be SLIGHTLY outdated now. It has the links to the information that Sally is talking about too, so you will be very informed and prepared by the time you visit your doc. That is the key to getting the rx.

Cherie

I think what I'll do, is just at the end of my appointment on wednesday, is hand him the printouts of the information. Just tell him that I'm kind of interested in it, and want to know his opinion. I wont try to show off what I know about it.

Maybe, ask him if he thinks it would be something to try, and maybe he can get back to me later on it.

I have a feeling that he wont be open to letting me at least try it. If he doesnt give me a Rx after he's read about it, I could probably try and see if my regular doctor would let me try.

I looked at some of the stuff you sent me information about, and was hoping I'd see a medical paper that told about it. It all seemed more like medical company propaganda then something that would be published in a medical journal. Maybe I just didnt read everything on the links.

I've been saving up some (not urgent) medical issues for my regular doctor that I'm going to ask him about. So, if the neuro doesnt give me a Rx, I can always hand the regular doctor the printouts about the LDN and see if he would be willing to let me try. Doesnt hurt to ask.

Does the LDN help some people with stiffness in the mornings? I know that I have a little spasticity, but it's not been too troublesome unless I've done something stupid like too much exertion the day before.

I'd just like to see if the LDN could do a little symptom management to keep my piddly symptoms like spasticity and numbness from getting too horrible. If I could keep them piddly little symptoms instead of ginormous bothersome symptoms I'll be happy.

This is the one I got from SallyC: http://www.lowdosenaltrexone.org/

There is a box you can click that takes you to LDN as it applies specifically to MS. That's the one I printed out.

Good luck!

As few of you know, my brother is a neurologist. He is just not an MS doctor.

This is what he had to say:

I hadn't heard about it, so I looked it up = probably the same information that you have. It seems to me that it is not likely to be harmful, although it hasn't been studied as to either effectiveness or as to toxicity. You can't rely on inidividual reports. There have been many drugs over the years which are touted as effective for this or that, which then are proven to have no effectiveness. Think about almonds for cancer and all of those who went to Mexico to get some sort of almond extract therapy.

Are you aware of something I'm not? If Wingerchuck is an MS expert, he may be more in tune with reports about naltrexone.

Your doctor is there for YOU but it is your body and your decisions. When I took Rebif, there were 6 month tests to see how my liver was functioning.

Naltrexone may have toxic factors but probably no less than the more expensive drugs.

I say that you politely let your doctor know he is writing the script. It is your body and your decisions. Offer to sign a waiver so he has no fear of being sued if he has that concern.

For me, no is not an option.

I just wanted to share a story with you.

I met an online friend at a LDN support site years ago and we have been e-mailing, off and on, since.. He was one of those gun-ho advocates of LDN.. To him, it was a miracle drug. I was on LDN, too but I sure didn't share his enthusiasm, since I was not having as much symtom relief as he was.

Just recently I wrote to ask how he's doing and after about 2 weeks, he wrote back to tell me that he had been in remission for the last six years, on LDN.....but......He started having more weakness in his limbs and went to his Neuro.

Many tests later, he was told that it wasn't MS but ALS.. His Doc said that it's amazing that, it hasn't progressed any further than it has and to continue to take his LDN. His Neuro is convinced that it helped to hold back the progression of ALS..

He is still on LDN and doing pretty well so far. I will keep in touch to see how he does in the future. I hope and pray, every day, for him, that the LDN continues to hold off the ALS progression.

I'm curious why he is of the impression that Naltrexone has not been studied for toxicity?

Naltrexone had been FDA approved for many, many years, and has undergone several extremely high dosage trials, for as much as 300 mg per day. We are only using 3.0 - 4.5 mg per day (about 1% of the trial dosage).

http://www.rxlist.com/cgi/generic/naltrexone.htm

Cherie