ok update from me again... i am still on 3.0mg.. everything is going just fine.. still no real issues with side effects.. no new flairs.. (knock on wood) which i was due for about a month ago.. i have noticed that my tingly fingers have got better.. LDN helping... i don't know but ill take it..

i have actually been able to go out and deal with the snow plowing like a mad man.. which i know for sure is due to the LDN because last year on the rebif my body was done after about 20min and needed a nap.. not the case this year i am running on LDN fueled snow removal and just come in the house after about 3 hrs of hard work, have a smoke and sit down eat, then watch some spongebob or fairly odd parents.. then go annoy my wife till she says "that legal crack you are taking is really working huh?" and i say "yup"... then do a little goofy dance and leave her alone..

only issue i have had that has nothing to do with LDN or MS is i managed to take an awesome spill on all the ice in the driveway... think i snapped my back out of place with that one but nothing my chiropractor can't fix...

Checking in: I am doing very well. Knock on wood. :) Much more energy, I really needed that. I seem to be able to get up a little earlier and go to bed a little earlier. That's good for a night owl like me. I get more done in daylight. :)

I have to be careful. I may be overdoing it. I want to do so much. My brain has a million things it wants to do. I couldn't do this much before because of the fatigue and lack of energy. I have a long to-do list.

I feel the LDN is definitely improving some of my symptoms, making me feel better, (I am usually an up type of person any way) and some other crapola symptoms more tolerable. :D For me it is almost 7 weeks on LDN so I can now compare my health before and after the drug more. May it long continue. :hug:

That's great news, Punk! It's nice to feel good again, isn't it?! And even nicer to do ordinary, everyday things and not be wiped out after 10 minutes. I overdo it all the time.....and pay for it later.....but I know the consequences and do it anyway! :rolleyes:

I am so inspired by your posts! Thank you, Punkdizzle and Lady.

Even when I overdo it, I don't seem to struggle. Yahoo! :D

WoooooooooooHooooooooooo, Punk, Lady, Kitty and Mto5.:grouphug:

well heres one more check in for ya...
ive been on LDN since sept 10th.the very next day i had significant improvement in my feet and bladder control. in fact i havent made a dash to the bathroom since.
by the end of october i was back to work full time. i got a release from my doctors (10/21) to go back to full duties and i work with agressive dogs in an animal shelter. (try wrestling an angry rotty even without MS)
my last neuro appointment (sometime in november) my edss score went down from 4.5-5 in august to less than 1. i even have days when you cant tell at all that i have anything going on.asking my neuro for the LDN is prob'ly going to be that one really smart thing i did in this life.

on the down side..... it sorta seems like my employers are trying to push me out. its prob'ly just me over thinking things but the timing and circumstances around everything just makes it look real suspect. but to tell you the truth, im not all that upset about it. i have been talking with my wife about maybe going back to school,training for a better job and such. maybe this is just that prankster who gave us all MS telling me its not such a bad idea. who knows.all in all i cant really make a career out of walking dogs and picking up poop anyway.
ive already put my regestration forms in at the local communittee college. its kinda funny getting and acceptance letter from a school that takes everyone but hey........
the next step is figuring out how im going to pay for all this

((((((((Flutemaker)))))))))) You Go Guy!!!:)

Hi Flutemaker that is excellent improvement in your score from about 5 down to 1 now. WOW! Congratulations. :):) Good luck with going back to school. :) It's fun. I went back to school so many times to change careers.

Hi Punk that snow shoveling is a hard job. You did good. Want to shovel mine next? :)

Kitty, when you open the capsules, and put them in water, how do you know the LDN is not sticking to the sides of glass in the 3 oz water? Just curious!

When I put pudding on a tablespoon and mix one capsule at a time, the LDN gets stuck on the spoon, even when stirred. I have to lick the strong tasting stuff off the spoon. Eeek!

Momto5 glad to hear overdoing it doesn't make you struggle. You go girl!:)

I think it might be kinda' hard to assess our short-term response to LDN, unless we have a long history to look back on with this disease.

Prior to going on LDN, I had had a couple of attacks that were very bad, and one I recovered really well from, yet the other I didn't. I probably went from an EDSS of 1 to an EDSS of 9 within a few days with both attacks, but I never did recover past a 5 or 5.5 with the second one, even after 2 yrs.

I started on LDN, and I reduced my EDSS by one point in 9 months, and I have stayed there ever since. That part was clearly due to LDN.

We should expect to recover substantially from most "normal" attacks, USUALLY ... especially in the early years. The goal is for LDN to help reduce the symptoms further, and hopefully keep us relatively stable after that. :hug:

Cherie

Just make sure you treat any infection immediately (like sinuses, etc.), Kelly, and if you are like me with colds, you'll get through this without TOOOooooo much ado. :hug:

Cherie

I have a question. :D

I have a Thyroid goiter which is visible, with many nodules in it. I can't touch the outside of my neck for pain or wear anything close up to my neck because it hurts my Thyroid so much.

I have been to my Endocrinologist for years, had it dx'd as such, and biopsies were taken. I had an MRI of the neck and Thyroid done, and an Ultra sound over the years also.

It is benign, TG. The pain from the pressure on my throat from the enlarged thyroid was just another disease with pain for me. No medication for it, as tests are within normal range.

My E.N.T. doctor wanted to remove half of it, the largest side and put me on Thyroid meds for life last year.

Having said that, I now have noticed that since I have been on LDN the Thyroid has shrunk to normal and no pain whatsoever. I can touch it and put on a turtle neck sweater even. This is amazing.:)

Do you think that after the last 5 years with this Thyroid condition that the LDN is responsible for this response? I just noticed it these last two weeks.

Thanks for any thoughts on this you pro's might have.:hug:

You know, LDN claims to be manage some types of cancer, so I suppose it is not totally unrealistic to expect it to help with other yet unknown ailments.

I have Ulcerative Colitis and haven't had one serious attack since being on LDN. It has been trialed and proved very successful for managing Crohn's attacks, so I've chosen to "presume" it is helping my UC too.

Geez, Lady . . . after all these years, I thought you might be one of the LAST people who would try LDN, let alone be so excited about it's potential. :D Glad it's doin' what it should for you cause you are a good example to have on our side of the fence. :p ;)

Cherie

Lady I believe that LDN, in raising our natural endorphins, can and does help in many ways to keep us healthy and fight certain illnesses.

I always notice than when I am ill with a bug of some sort that I am better in a shorter period of time, now, due to LDN, and sores seem to heal faster....my hair and nails grow faster and stronger.:eek:

LDN has not cured my MS, only helped reduce symptoms and attacks, but taking it has made me feel better overall. It is a good thing..:cool: I will take it for the rest of my life..:hug:

I found something on the LDN website about Thyroid conditions. This may be why my Thyroid is going back to normal. It sems it regulations the Thyroid in some way. Hmm

Under cautions and warnings.

Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult).

Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism.
http://www.lowdosenaltrexone.org/

Lady, I think that is so exciting! :D

If the theory behind LDN is true, and our immune systems just needed more endorphins in order to be regulated properly...it would make sense to me that things that are affected by our immune system would improve...

Healing of sores, colds, infections and any other "dis-ease" the body is trying to fight. Thank you sooo much for sharing. :)

So I usually see my MS Specialist once a year for LTD purposes (whether I need to or not), but I made an appointment early this time so that I could talk to her about the possiblility that I may have Devic's/NMO. We talked for a while, and then she suggested minocycline to add to the LDN. We've had that conversation before, because I seem to get lots of infections that stir up the MS, but had decided not to at the time as I had had an allergic reaction the last time on Tetracycline.

I decided I'm going to try it again though. :cool:

After talking with her, she arranged for me to meet with her PA to go over the latest trial opportunities, and for me to get the rx of minocycline. She came in and the first thing out of her mouth was "where is the best compounding pharmacy locally for people to get their LDN?". Her next question was "what side effects might some people get?"

It seems they are rxing LDN from there now too, just as my last MS Specialist got on board eventually. :) I never asked any questions about "how many people are asking for it?" or anything, I just went along like I am not surprised that some people would be requesting it.

I have only had one MRI in almost 18 yrs, so before sending away my NMO-IgG testing (for Devic's), my Neuro has decided to do another MRI. She wants to see what has changed since 2003, and how big my spinal lesions appear now. The last time I didn't have gad-enhanced, so there really isn't going to be a good comparison, but at least we can have a solid "view" to go forward from now.

Interesting meeting. :)

Cherie

I am finally back from my wonderfully long vacation. It is very good to be home. We had a wonderful time, and I was able to be quite active (for me). I didn’t use my power chair even once, though we did bring it with us for much of the trip. I was also glad to have and use the rollator several times because it meant that I could do much more. If we had taken the same trip last year at this time – before LDN, I never would have been able to do half of fun stuff I was able to do.

Good for you, Marion! We don't need clinical trials to tell us that LDN works! ;)

Welcome back Marion. Whoo Hoo for having a great time.:cool:

I am so glad LDN is helping you to live a better life. :hug:

Ithink I need to go back to school and become a hairdresser and a nail technition.

I could make a fortune off you guys. http://dl7.glitter-graphics.net/pub/...ytarkruw36.gif

I just received the NMSS Spring 2009 magazine issue and found it online also. Their magazine is called "Momentum".

They have a section called Healthy Living, and Low Dose Naltrexone
information is listed there on three pages in the issue.

They are calling it a CAM therapy. Complementary and Alternative Medicine. Low Dose Naltrexone by Allen C. Bowling, MD, PhD

Online it is:

http://www.nationalmssociety.org/mul...-09/index.aspx

then click on: CAM: The "411" on low-dose naltrexone view as PDF

Hi Marion welcome home again. I am glad to hear you had a wonderful time. :)

.

Tee Hee, Lady. That's called protecting you a s sets, by stroking your Patients, the NMSS and Big Pharma.:rolleyes: :D

100 percent correct Sally. :D They are sitting on top of the fence on this one, and staying there, for now! ;)

Since so many Neuro's are prescribing LDN, and some small trials have been completed, the NMSS have to be part of the action. Yet, they are fearful of losing their sponsors.

Many off-label medications have taken this path with the NMSS. Just like Neurontin, Provigil and Lyrica, etc. All were used off label. They have used depression meds for pain for eons.

LDN can be used with some DMD's as combo treatment. I am not too sure about the interferons. I don't have that knowledge.

I am sure they will take that route, since it still covers their buttski's. If things change, they will change too. They can't deny all the website attention LDN is getting now from doctors, here and abroad.

Well, I just received, in the mail, my umpteenth LDN prescription and was sitting here wondering, how long, before a cure or at least an effective Med, for all, will be discovered.:confused:

Don't get me wrong, I love my LDN, but I still have MS, with all the disability, I had acccumulated, before LDN.:mad:

I would still like to run over to DD's and visit with her and DH ands Grandkids, and have fun, one more time, before I leave. "I have promises to keep, before I sleep.":)

Check in: I had a Neuro visit a few days ago and she was very surprised to see how much I have improved on the LDN 3.0 mg. My exam was excellent. She said she will be taking notes on me and doing the full Neuro exam. She said to continue taking the LDN.

So, today I went to my PCP for my refill script. He gladly gave it to me, with a few 90 day refills. I gave him the NMSS CAM article for my file. He said thanks, he may have to give more of his patients LDN.

So I will be refilling my script too Sally. I know you are tried of all the fuss and the refills, but this is a first refill for me and I get excited. (happy dance)

I remember refilling the Copaxone every month, for 3 1/2 years, it got boring. I, too, wish for a cure, with reversal of all residual damage for everyone. I keep praying. What's a girl to do? :)

did you not hear about biogen's new toy? they have one in the works(probly about another ten years before testing though) that they claim can actually reverse MS. theyve been working on it for the past 8 years or so, but they seem real excited about it.
http://www.xconomy.com/boston/2008/0...ple-sclerosis/

im a second generation MSer myself. my mother was diagnosed when i was 18.even before then the nmss was preaching 'A cure is just around the corner'...........i gotta ask, how the hell far away is this stinking corner?

That doesn't sound like a cure, either, Lady. In reading the blurb, I read things like having to take this drug chronically and also it is to be taken in combination with Avonex or Tysabri..:eek: Don't expect a cure from Biogen.....that would cut into their almighty profit.:mad:

The idea sounds good, though, if an honest scientist gets ahold of it and comes up with something that will permanently allow remylenization (sp). It's a positive thing but not in the hands of Biogen IMHO.

Thanks, so much, for posting this, Flutemaker..:hug:

im not realy counting on biogen either. the mayo clinic is working on something simmilar, just biogen is farther ahead. maybe having mayo hot on their heels will get biogen moving though

Thanks for the Biogen article Flutemaker. :)
I don't trust Biogen for some strange reason. ;) They do a lot BS. First they said they were going to give humans mouse DNA??? Now they changed it to human DNA in the new drug. We will have have whiskers and tails at this rate. :D

Avonex is made in the ovary of a Red Chinese hamster, and now mouse DNA. Yikes! I bet it will end up being an injectable, not an oral drug. Injectables cost more. This drug will take ages to come to market. A Clinical trial is just being applied for. I hope something better pops out of the pipeline for our myelin repair very soon.

The article says we do not re-myelinate on our own. That is not true, we do, in many people it has been shown to occur. I think someone has their apples and oranges mixed up. Thanks for the article. I like to read what's happening on the drug front even if they were going to re-coat our nerves with mouse goo. Yucky!

Whiskers? I'm perimenopausal and already have a few of those! :D (Hope I don't grow a tail, too!) :rolleyes:

Hi all :)! I've been on a 3 mg dosage for more than a week and I've noticed a huge increase in physical energy :D!! I'm so happy! I've been mia lately. I hope everyone is doing well :).

That is great to hear/see, Joelle. If I had more energy I'd be here a lot less, too..:D

Great news, Joellelee!

Have you gotten past the withdrawals, etc. now too? Pain level is ok?

Cherie

I am postmenopausal and have those goat hairs pop up on my chin.:rolleyes: Like one day nothing is there and the next day this 1/2 inch white hair pops out. I think they hide under the skin and jump out when you have a party or someplace to go. They hurt when you pluck them too.:rolleyes:

When I am on steroids forget-about-it! Pluck, pluck.:D

Now Twinkletoes..about those tails. Hmm :) I'm not even looking.:cool:

Great news Joellelee. You did it. You got off that pain med too. I am happy to hear that you have more energy. I think LDN helps with some types of pain too. IMO.

Don't spend all that energy too early in the day. Spread it out and make it last. I overdid it a few times cleaning. I love to clean and had a long to-do list. I have learned to enjoy this new found energy.

Congratulations :hug:

Cherie - I got through the withdrawal ok. But...since nothing else works for the pain, my neuro said for me to go back on them and just take them when I'm having a really rough time. They still work for the pain even with the LDN, yay! Lady - I hate to clean :D so I don't think I'll over do it that way! :D

To the best of my knowledge, the only issue with using narcotics and LDN is that the LDN might make the pain relief less effective. The main concern with that would be that a person may end up taking TOO much, OD'ing, etc.

Otherwise, I don't think there is any contradiction.

Glad you are able to do both, and you are getting what you need from both remedies.

Cherie

I posted in the thread down below that references the article in the NMSS Momentum magazine but I wanted to mention it here as well. You can download the article here: http://www.nationalmssociety.org/mul...-09/index.aspx It's in the Healthy Living section.

I would love to hear reactions to the article from those on LDN. Maybe it's just me or that he's speaking in that conservative doctor tongue but I thought it was a little bit of a downer. There were also some things he said that LDN didn't do that I've seen anecdotal reports about to the contrary.

Or...maybe it's just me overtired and under-caffeinated!

BG, thanks for posting.:) I read the entire article and it is what is typically reported by Dr Bowling. He is a Doc and a scientist so anticdotal reports from peeps with MS is not going to sway him or the NMSS..:rolleyes:

For us who take LDN and find it helpful in fighting the effects of MS, are a study all to ourselves..:cool: The proof is in the pudding..:D

Studies on LDN for MS are continuing and depending who what where and when these studies are done, are showing the Pros and Cons of it.....mostly Pros very little Cons.:)

They can keep testing it till the cows come home, I've been on LDN six years and my DD, with MS, has been on it, since she was DXed, 4 yrs ago.

I remain stable with no worsening of the disease and DD is in remission and the only time her MS sx cropped up is when she stopped LDN for a month. As soon as she went back on it she went right back into remission..:)

So that's my neoscientific report....who you gonna believe..LOL