If you Doc prescribes it, it could be paid by your insurance...Some do, some don't because of the off lable use.

It took three years of pestering my MS doctor to get him to give me a script for LDN. Persistence is a GOOD thing. ;)

Hello Everyone,

Thank you so much for all of your posts. Reading this thread from beginning to end has been really helpful in providing the information that was needed to make the decision to give LDN a try. The information has also helped to be able to discuss that choice intelligently with my PCP and the MS clinic (who contacted my neuro on my behalf).
My PCP only had info on naltrexone being used on label at 30-50mg for addictions; so he wanted to check into it before writing a script for LDN. While I waited for him to do that I also had a call in to try and get the prescription through the MS clinic and my neuro who only comes to my area every 6 months.

In the end it was my MS clinic neuro who agreed to write the script, but first I had to hear the statistics from his side on the lack of evidence supporting its use. Fair enough. I heard how the results of a double blind study that was done in 2010 revealed no improvement in the participants, as well as his personal observation that no change had been reported in the 12 or so patients that he had prescribed LDN for thus far.

It makes me wonder if those who had tried LDN in the double blind study and in his practice as well, had taken LDN following the protocol as recommended here and on the LDN information sites, because the script my neuro has written is for 4.5mg, and simply states to take it once a day. If others had taken it during the day instead of at night, I can see how the results would be less than optimal. Ah well, it just goes to show how valuable this site and doing our own research really is, so thank you again.

So with the info I've gathered from this thread and the LDN sites I will need to alter the dose a bit as the script has been written for 4.5 mg caps. I would like to start with 3 mg/night so by opening 2 of the capsules, mixing the powder up well and dividing the resulting 9 mg into 3 separate doses, that should provide 3 mg for 3 nights each time I open the capsules like that.

I haven't decided yet if I will mix the contents of the 2 caps into water or something thicker like pudding/jelly and then just take a third of it for each dose. I'm a little concerned that it might not dissolve evenly if I mix it in water or that having it sit in pudding/jelly for a couple of days might not be a good idea either.

I did speak with the pharmacist who is does the compounding and found out that he has LDN in 4.5 caps already done up and that lactose is the filler. He said that unless I am really sensitive to lactose, that it shouldn't cause any problems. I do have regional enteritis (right now in full flare with bleeding etc), but I agree with the pharmacist that such a small amount of lactose wouldn't make it worse or cause a reaction. I am not super sensitive to lactose but do react to it, so don't drink milk and avoid foods that contain it in any great quantity.
Suggestions based on your experiences in this respect are appreciated.

Taking the LDN between midnight and 3:00 am will not be a problem as I can not sleep or lie in bed for more than 2 or 3 hours at a time due to pain and spasms, then I always get up for an hour of yoga/stretching around midnight. By 1:00 am I can then go back to bed and sleep for around 3 hours so I think that I will take it around then.
Again your thoughts on this would be very much appreciated.

Sure hope that this helps, even in a small way as I am at my wits end. Neuro-muscular system and gastro-intestinal system have been in full flare for the last 2 weeks, thanks to a couple of concurrent infections (tooth and lung), and inflammation in these systems are out of control. I can't take steroids, anti-inflammatory or most pain meds because of GI/liver stuff, so have been off of all meds like that.
Baclofen hasn't been working very well either and it makes me feel depressed and suicidal at high doses, so I've cut back on that as well and only take 5-10 mg at night.

I have to drive 90 minutes to the pharmacy that has the LDN and can't do that until tomorrow, so I'll be taking the first LDN dose on Friday night.
Wish me luck.

With love, Erika

Hi Erika, welcome to the club. :) Much luck is wished to you, that LDN helps you as much as it has helped me and even more..:hug: It's not a cure, but has helped me to feel better and stronger, for the last 10 years.

I agree, your Doc is not following protocol and you are wise to note that. My Pharma(Skips) uses Avicel as a filler, because Lactose was causing allergic reactions in some. Lactose is the orig filler recommended by Dr Bahari, but not all can take it. Just be sure it is a fast release filler!!

Don't expect too much and give the LDN at least 6mos to a year before giving up on it. I couldn't live without it, now that I know how it has kept my disease so stable for the 10 years I've been on it, after giving up on ABCRs.

It's simple to me how it works...I raises my Endorphines (Nature's pain killers and energy boosters) and I just feel better. At first, like everyone else, expected more and was disapointed that I wasn't cured.:( I did feel a bit stronger and healthier though, so I stuck with it. It has never failed me, IMHO!

Good luck!!!:hug:

Thanks Sally. I really appreciate your posts in this thread as you seem to have the most experience with LDN.
Last night was the first dose of the LDN. I emptied two of the 4.5 mg capsules onto a plate, mixed it all together and then mixed it with exactly 3 tablespoons of yogurt. I took one tablespoon full of the mixture at midnight.
Nothing to report as to changes but I didn't expect any so early on. It was a restless night as per usual and the body was not happy following the 90 minute drive to the pharmacy, a bit of shopping and then the 90 minute drive back again. So it goes with living in a small town. A lot of things are only available in the nearest city which is 90 minutes away.

What I did find interesting was that even the pharmacist didn't seem to know that LDN needs to be taken at night or in the wee hours of the morning for best results. His advice was to take it once/day, and he only off-handedly mentioned that most people take it at night. Maybe at some point someone will do a double blind study starting with a 3mg dose, working up to 4.5 and assuring that it is taken between midnight and 3:00am.
Now the findings of that sort of a study might prove interesting, wouldn't they?

With love, Erika

My current neuro who prescribes LDN often told me it didn't matter day or night. I mentioned what everyone says about last thing before sleep here & why, he then said he doubts it and also doubts LDN does anything.

I didn't last a week cause I exercise too much to not get a good nights sleep.
I'll try it again, with lunch meds. The dreams were fun for the most part.

Hello EddieF

My neuro basically said the same thing, but having read through this thread and also checking out the links to LDN before hand, his response to my request for it as well as the instructions on the bottle (4.5mg take once/day), had me thinking that if the neuro is prescribing the starting dose and how to take LDN incorrectly, then the expected results can't really be expected, can they?
I chose to go with the suggestions made on this thread by those who had on the ground experience with LDN.

With all due respect, the way in which you are/were planning to take it might not be the best, as it does not take advantage of when the endorphin release occurs, and so the dose may miss influencing the biofeedback loops for increasing over all production and also for increasing the number of receptor sites to endorphin on the cells.
If I understand the LDN info correctly, this happens during sleep and usually somewhere in the middle of the sleep period.

Further, I do know that the endorphin release that occurs as a result of exercise or other stress requires extremes of stimulus (metabolic imbalance due to muscle fatigue, pain, severe emotions like fear, love, rage etc), for the endorphin to be released in appreciable amounts. For sure some is released during 'regular workouts' but it is at the point when muscle fatigue moves into failure that most of the endorphin is released; and thus functions to allow the tissue to keep on working. In addition, at those times, the endorphin is generally short lived as it requires the stimulus to continue for its levels to remain high.
At the same time, adrenalin is also present during extreme stimulus and so physiology in general is quite different than when the body is asleep; as in 'fight & flight' (sympathetic nervous system dominance) as opposed to 'rest & restorative' (parasympathetic nervous system dominance).

I'm not sure on this but I suspect that when the body is under the influence of adrenalin and is thus in the "fight or flight" state, it may not have the same capacity to alter its basic functions at that time with respect to endorphic adaptations.
This follows along the same lines as the reasoning behind ensuring adequate rest periods are taken between workouts. It is known that the rest period is required for exercise to be beneficial; for if that were not the case, one who chose to exercise continuously would just get stronger and more efficient as they went along...and that is not the case in practice.
The way it works is this: the stress of exercise creates an imbalance (muscle fatigue and possibly inflammation), and that is compensated for by increasing the size and efficiency of muscle tissue; but that adaptation happens during the resting phase, and also occurs mostly during sleep when growth hormone levels and prostaglandins 1 & 3 (body's own alkalizing anti-inflammatory agents), are highest.

I wanted to share these thoughts on LDN because I'd hate for anyone to miss out on the potential benefits of it, simply because the suggested protocol wasn't followed.
With respect to the sleep thing, yeah...I don't know. Mine was/is so messed up that I don't think that it could have gotten much worse by taking LDN or anything else for that matter. I've always had good and lucid dreams; so haven't noticed a difference there.

With love, Erika

I've been meaning to get back on this thread and share the experiences that I've had with respect to starting on LDN 1 day short of 2 weeks ago, but I thought that it would be best to give it at least a 2 week trial first though.

I'm happy to report that the experience thus far has been a very positive one. It did take a little experimentation to find my "sweet spot" with respect to timing of the LDN dose; and in the end it turns out that for me, around midnight is the best.

By then I've had around 2 hours of actual sleep and then around 1:00 I lay back down and at least try to get another 3 or 4 hours in. This usually occurs in 30-60 minute stints, but I do get it now where before LDN, it wasn't always the case...even with Baclofen to control the spasms.

There are still nights when I hardly sleep at all, but thinking back, these were also the nights that I took the LDN earlier or later than midnight. So even if it is in a slight way, I think that the LDN has improved the quality and the quantity of sleep that I get.

Here are some of the things that I've noticed:

- fewer and less severe periods of cog-fog (this is a HUGE thing for me, and I'd stay on it just for that reason)

- less fatigue during the day, but when it does hit, OH Boy...It's like it has been saved up or something. Good that this occurs at the end of the day when it does occur, as I just take advantage of it and get some extra sleep in. Doing that does seem to mess up my already messed up sleep cycle-times though. I figure that it will sort itself out so like always, I just take one day and night at a time

- less need for recovery after physical activity and I can go for longer periods without having to rest

- less neurological stuff in general; shooting pain, buzzing, etc. although I have had a few days in the past 2 weeks when my feet and lower legs went numb. I have no idea if I was heading into a TM flare, or if it was just a carry over from past ones or what. I also don't know if LDN interfered with the progress of it in anyway. Generally, when I get that symptom it does last for longer than it did though.

- less hair falling out of my already scantily tressed pumpkin (LOL)

- more balance in general but I'm still unsteady when the fatigue hits and maybe a little more so

- more sensitivity of the teeth; I have no idea why that would be, as my oral hygiene, diet etc has not changed. It's another wait and see thing.

- more and longer periods of clearer vision; but also more extremes in vision; either really good or really bad

- more muscle twitching; its not painful, just annoying

- more perspiration (Ok for your decorum sensibilities, Sally? -LOL), and more need for deodorant (Sorry...there's no nicer way to say it than I can think of right now.)

That's about it, but I'm looking forward to seeing how increasing the dose goes when the time comes. I know that I'm not ready to do that yet though.
I did try on three occasions to go with 4.5mg (because I was either too uncoordinated to prepare the 3 of the 3 mg dose from 2 of the 4.5mg capsules, had forgotten to do it before hand, or was just too tired/lazy. The wonderful thing is that there were those different reasons. Before starting LDN, it would have been all of them together.

Anyway, it seemed to make me a little too 'speedy' in the morning, as well as less tolerant of situations as well as others by the afternoon (ie; cranky, moody). Very few medications are worth that side effect in my world.

Will keep you posted.

With love, Erika

Thanks so much for that post to Eddie and for all others who question the time thingy. :hug:

I'd like it printed in gold please..:D

Happy you are doing so well and also noting the subtle but good changes with LDN. BTW, I was on 3mg for about 2+ yrs before I could successfully switch to 4.5mg. My legs would stiffen up on 4.5?

As mentioned in another post, I think that LDN helped the body to recover from a long day of driving (8+ hrs), which was followed by another 3 hours of fooling around with a flat tire, arranging for a tow truck and more driving. At the end of that day I was exhausted, uncoordinated, and dizzy and vision was blurry and dim. The worst symptom that increased was in the legs; and they were quite weak and spastic. To make it up a flight of stairs I had to use my walking stick and my free hand on the stair above; so I sort of crawled up them like a little kid.

Normally I would have expected to be 2-4 days recovering from fatigue, spasms, pain, dizziness and sleepless nights; but within 24 hours these symptoms were very much reduced and things were pretty much back to how they were before I had set out on the trip.
I slept fairly well in a strange bed, when normally that would have been impossible with the symptoms that were going on at bed time; yet by the next morning the body was well on its way to recovery. I did take it easy for most of the next day and did need to take Baclofen for the leg spasms, but before being on LDN, I would have been incapacitated physically and mentally.

What I found most surprising was the total absence of cog-fog during the drive, the flat tire episode and a round of visiting with family after all of that. By the time I got to bed I had been up for around 18 hours. Yet, even with other symptoms, the brain was receiving and processing information throughout it all with not so much as a blip even during the worst of the fatigue and spasticity; which is amazing compared to how things have been for over a year.
The next morning cognition was still good and I was able to arrange for a tire replacement for the truck. The other symptoms had improved enough so that I was also able to drive there and deal with that without any problems; all in a town that is not very familiar to me.

One thing that I was hoping LDN might help with is hair loss from low thyroid function; but so far not much change in that department. I did notice being a little hyper after about the first week of LDN and so I stopped taking a nutritional support (L-tyrosine), for the thyroid/pituitary/adrenal axis and that's when the hair started to fall out; so I'm going to try taking it again at a lower dose than I was taking before.

All in all, LDN has really provided the most benefit when compared to everything else that I've tried, including PT, meds and nutritional pharmacology. I'm very happy with the change thus far and even if nothing else improves, getting cognition back is enough. That has given me my life back.

With love, Erika

Great Erika!! Keep in mind, that you will have days when you think the LDN is not working, but it is, don't give up. I've had bad days but I always seem to recover faster.

Like when I was in the hosp after that fall that sent me into an exacerbation from hell. The PT Nurses were amazed that I was outta there in 10 days & not the 3 wks they had planned for me. The younger lady next to me was there for 3 weeks and she was walking.:eek:

EDITED TO ADD. I think some of our LDN members have given up on it?? Not as many posting here anymore. I hope they're OK..:hug:

Mariel,

Maybe someone here (SallyC ?), can PM you with the contact information for Skipps Pharmacy. From what I've read on this thread, he is someone you may actually be able to talk to that is very knowledgeable about LDN; and he may be able to find out for you if LDN is contra-indicated in your situation or not.
You have nothing to loose but the price of a phone call.

Pharmacists often know more about this stuff than doctors or specialists because they have the educational background, all the cool reference books and the e-links to pharmacy related info sites (from research facilities to the drug companies themselves).
It is the business of doctors to know diseases, treatments and management, but it is the business of pharmacists to know about drugs, interactions, contra-indications etc.

I hope that it turns out that you can try LDN and that it will help to at least take the edge off of your symptoms.
Good luck and please keep us posted on how you make out.

With love, Erika

It has now been one month that I have been taking LDN and some of the changes that were listed in my previous post at the two week mark have evened out.

Overall there the most significant improvement has been in cognition, vision and mood.
When I think back to the problems I was having with cognition, it is truly amazing the change that has occurred for now, all aspects of memory and cognitive function is much improved and remains fairly constant; where just two weeks ago it was still fading when fatigue set in.

Vision is better and more often I can use things like the computer without having to enlarge font or take breaks because of blurred vision. I can also read things like newsprint and books, where that was very difficult before without magnification.

With respect to mood, I think a lot of the improvement is because there is less stress and frustration present due to the extra energy that was required to accommodate problems with cognition, vision, coordination, spasticity, pain etc. Thus with the more severe aspects of those symptoms reduced, there is more energy, less fatigue and a great deal less frustration.

So have these improvements been due to the LDN or a remission? I had to find this out for myself, for along with wanting to satisfy my academic curiosity, I also wanted to differentiate between a remission and the effect of LDN. If I could get that information, there was the potential of discontinuing with the LDN if the improvements were due to a remission even if the LDN had fostered it.
Yes, I know that it is not recommended to discontinue LDN from what I have read on this thread, but it is still a drug and I would prefer to not be taking anything if at all possible.
So 3 days ago I stopped the LDN...and resumed taking it yesterday.

In short, I am now of the opinion that the improvements are due to both the LDN and a potential remission; but within the first 24 hours of the first missed dose, I was already having cognitive issues (memory mostly), general incoordination and muscular weakness, visual blurriness and whole body fatigue.

Along with that, an ankle that had become swollen and sore (apparently due to an infection and sprain) three weeks ago, flared up immediately within that 24 hours.
It had begun to improve over the last week, but I am now packing it in ice several times a day and through the night, as well as using a topical anti-inflammatory in an attempt to bring the heat, swelling and pain under control once again.
If these measures don't work more than they have since starting them 2 days ago, I will likely be looking at another round of antibiotics and/or some other form of treatment; as it is difficult and very painful to walk with it.

With love, Erika

IDIOT!!! I cudda told ye that would happen.
No matter what the non-believers say, that Placibo is strong medicine..:D:p:D

ROTFLOL :):):):wink::wink:

Thanks Sally!:hug:

Sally please give me the number for Skipp's Pharmacy. Erika suggests I give them a call to discuss what effect LDN might have on Porphyria.
I can probably find it by googling (later, after an appt.) thanks to you and thanks to those who have posted on LDN.

http://www.skipspharmacy.com/wplog/ :):)

Address & Phone

21000 Boca Rio Rd
Suite A-29
Boca Raton, Florida
33433
561-218-0111
800-553-7429
Fax: 561-218-8873

It seems that the body is undergoing another flare up. First came increased problems with swelling and pain in the ankle, then the eyes went wonky and as of yesterday morning I have the hug as a bed fellow. It kept me up most of the night last night but has finally eased off a bit now.
Ah well...I can stand to loose a couple of pounds, although I don't wish this sort of a weight loss program on anyone.

Before the hug arrived, I was sleeping the best that I have for years (4-5 hours straight) and that change came when I increased the LDN to 4.5 mg. I did try to go back down to 3mg but the ankle, eye and sleep symptoms seemed to get worse; so I am back on 4.5mg and feel better for it.
I don't think that the higher dose is increasing spasticity as some found that it has when they increased it. The hug typically does come on for me if other symptoms are increasing; so I can't really say that its return has much to do with the higher dose of LDN.

Interesting thing is that although these symptoms are present, the severity is considerably less than what has been experienced previously during flares. I am still mobile although I use a walking stick for extra support for the ankle in the mornings when it is at its worst and also if I will be walking any distances.
I attribute the milder severity of symptoms to taking LDN and do blame myself for getting into another flare by coming off of it a while back (just to see if there would be a noticeable change). That two day hiatus of not taking LDN brought on the ankle symptoms again and that seemed to have gotten the 'flare ball' rolling.
Live and learn.

Also of note, my mood is good (humour is intact) and although the body is tired from loss of sleep, coping with symptoms and more recently the hug, cog-fog is not much of an issue .
As I have said before, this is huge for me; as I found that symptom was the most difficult to cope with. Loss of coordination and/or dizziness are not very much of an issue either so far.

All in all I feel quite able to ride this flare out without the need for much intervention; although I have scheduled some massage therapy for the spasms in the back and for the ankle/leg. I am also doing electromagnetic biofeedback therapy (similar to the therapy that Dejibo is doing), to help get the body back into more optimum balance.

The eyes have been giving longer periods of clarity (a couple of hours at a time earlier in the day), but there is still a fair amount of pain so I am doing my best not to strain them too much.

With love, Erika

How's it going with the flare and LDN. I found that if I religiously took my LDN while in a flare, the flare was shortened and I did'n seem to have any lasting bad effects from the flare.

I missed/forgot a day of my LDN and Prozac last week and boy did I know it.:eek: Was nothing but a marshmallow that day. Note to self - Don't do that again.:)

I hope your flare has eased up on you and you're feeling better, Erika....and that goes for the rest of you too..:grouphug:

I stopped LDN when I had surgery a year ago. I think I'm going to start it again. Haven't had any real big problems without it but I just seemed to feel better when I was on it.

Sally, do you still talk to Dr. S?

Yes, I still order from him. I feel better on it too. :)

Still taking LDN and don't plan to discontinue it; especially after the epic fail when I did because I just had to know if it was really working. Yeah I know...IDIOT :D.

Almost made an appointment to see my PCP today but after thinking about it some, couldn't see much point. I can whine here if and when the need arises and that's about all I can do there. Most of the meds that I've tried either have side effects that aren't worth the risk or don't work well enough to relieve the sorts of symptoms that I'm having. So other than looking at me like I have three heads :eek:, he doesn't offer much else.

Nasty headaches and arm/hand numbness are continuing and as I said in another thread, sleep is a passé concept lately. I don't feel unwell other than the headache thing, but that on top of lack of sleep and the usual spasms in the legs have taken a toll on my energy level over the past week or so.

The good news is that cognition is intact (at least I think so :p), as are a good attitude and a sense of humour :).
I attribute those in part to the LDN because in the past these things were issues of greatest concern when symptoms were hot.

I double dosed on the LDN by mistake one night but had no ill effects. Evenso, I now have a better system to keep track of it.

Long story short; will have another full neuro workup in December with MRI of head and spine; then will see the neuro in January. If the headache and arm numbness don't ease off by next week I'll see what the PCP has to say about it; as I would like to get back to work.

Haven't been posting much because it takes a long time to type even with spellcheck; but am reading posts and wish everyone well :hug:.

With love, Erika

I missed taking LDN for just one dose on Friday (slept through my usual time to take it after a rather late night). By late morning yesterday by body felt like it had been in a bad fight; achy and muscle pain/stiffness more than usual.
Took the LDN dose last night at the usual time but woke up this morning with back spasms and with all over body aches continuing.

Had a similar reaction after skipping a couple of doses in the past...but am surprised that this could happen after missing just one dose.

Has any one else noticed such a set back after missing one dose? I'm wondering if maybe I'm coming down with something as well/instead.

Thanks.

With love, Erika

Sounds like you may be coming down with something, but I hope not. :hug:

I am off LDN for a few days. I had a tooth pulled, and the start of a tooth implant installed last week. I am going to be relying on Codeine to keep me comfortable for a while.

The actual dental procedure wasn’t all that bad, but that tooth was really stuck in there good. Where the tooth used to be is now quite painful, but the headache I have is much worse. I guess it is from all that tugging and pulling that was done.

I had been worrying that the procedure might trigger an MS flair, but I think the danger of that is gone by now. I expect I’ll be back on the LDN by midweek next week. Until then I’ll just take it easy and go with the flow.

I'm going back on LDN. I have a phone consult scheduled with Dr. S in September.

Everything else I've researched and read about is way too scary. I have enough to deal with with MS.....don't need a multitude of medication side effects to try and decipher.

My Neuro is really pushing Tecfidera. He won't be happy with me but he's going to have to test this new med on someone else. ;)

I hope LDN keeps you as happy as is does for me, Kell. :hug:

My symptoms always get worse if I go off LDN; even for a few days.
When I was in hospital for digestive stuff recently, the docs said that I'd have to go off of it, which I did for 3 days. The night spasms got worse as did tremors, headache, fatigue and numbness. So after the surgery, without telling them, I started taking it again and began to feel better within a couple of days.

I'm with you on the not wanting to take a bunch of medication, especially experimental ones. Baclofen, Ibuprofen and LDN are pretty much it for me.
Hope that the LDN takes the edge off for you too :hug:.

With love, Erika

Okay, can you take LDN with a DMD or is it used in place of one?? I just seam to keep going down hill with my walking and balance. I'm on Tec.(into 2nd month with no side effects), but still having lots of problems with walking and balance. I'll be in a wheelchair if I keep going this way. I already took my scooter to school this year just to get around.

Just wonder if I need to talk to my DR. about this. Any thoughts??

Gee, that's a good question. If your doc is familiar with the mechanism of LDN, it would be worth asking about taking the two at the same time.
You might also check with one of the following LDN info websites:

The Low Dose Naltrexone Homepage
http://www.lowdosenaltrexone.org/

LDN Research Trust : LDN Research Trust
http://www.ldnresearchtrust.org/

With love, Erika

Oh crumb!
My supply of LDN is running low so I put in a call to the MS clinic and left a message on their voice mail asking to have my neuro renew it for another year. They called back to say that my PCP can renew it.

I told the receptionist that I had asked him to do that the last time I was running low but that he had refused, saying that he "was not comfortable doing so because he didn't know anything about using it off label like that."
She said that she would call the neuro and would get back to me after she spoke with him.

The next day she called to say that he would renew it for a month but that he wanted to see me before renewing it for the coming year. I have an appointment at the end of October.

Sheesh...what a hassle it is just to contact him; never mind asking for something specific like a script renewal. The above sort of phone messages and return calls is typical and typically takes place over the period of several days; as it did this time around.

I hope that the upcoming appointment doesn't mean I will be put through another battery of tests (MRI, evoked potentials, Cognitive tests, Conduction studies, blood work etc.) like the last time.

After the last round of all of that, the neuro said that my MS had gone from RRMS to SPMS; and that there wasn't much treatment available other than some trials he had going with off label use of drugs. I declined to do that and I got the impression that he more or less dismissed me from his care (didn't want to book me for a follow up.) Now he wants to see me again?

Along with the whole day that seeing him involves (the drive alone is 90 minutes one way), plus the usual round of visits to the PT, OT, MS nurse at the MS Clinic, I really don't want to go through all of that testing again only to hear how things have progressed according to the test results.
I already know that without the tests.

I wish that he would just renew the LDN.
Do others go through this to have the LDN script renewed?

Yes, I know that this not the thread to go off on a rant...but it didn't deserve a separate thread.
I feel much better now :D.

With love, Erika

I have a phone appointment in October to start LDN again! :)

I know it isn't a cure but I do feel so much better when I'm on LDN. Can't wait to get it and begin taking it again.

I have an appt with the same Doc, on the 7th of Oct.:D

That's my appt date, too!!! 1:45 PM. We'll have to ask Dr. S if he's knows we're friends! No wait......that might scare him!!! :D

LOL! Mines at 1:00. I'm going to mention it, so he may say
something to you.:D

So is mine! 1:00...but on the 30th.
Weird.

With love, Erika

Yey! Just got a phone call from the MS Clinic nurse that my neuro has renewed my LDN for a month. That will carry me through until I see him at the end of the month. What a relief!

With love, Erika

Hi all!
Figured I would drop in with my LDN update. Well it has been 5years and 2 months since I started LDN and still nothing major (just old Sx showing up if I get over heated) I have been really stable, my neuro still has no faith in my choice, She still says "there is no proof it works." I tell her "I am proof" ;) Anyway I just wanted to drop in and give an update, I know I don't visit as much as I should, but when I am feel good I don't really sit in front of the computer much.

Hope everyone is doing well, And I will catch up with everyone soon since I don't want to go outside in these sub zero temps.:eek:

Hi PunkDizzle! Good to see you here. I see you still have the cute little head banger smilie! :)

HAHA! Yup, I love that little guy, though I don't head bang as much as I use to since it makes me a little dizzy these days. :D