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..:eek: Do what I did and have them all pulled...no more worry, no more infections.

:hug:

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. :rain:

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..:o

I hope you get back on, soon..:hug:

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. :D 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.

Work in what way, Kelly?

If it was going to work for symptoms, I would think it would have worked by now. You may see some very slight improvements beyond 6 months (like gaining slightly more strength, for those that is a problem), but I would think you've seen most of the symptom improvement you might by now.

Have you tried not taking it for a week or two to see if your symptoms change at all?

As far as reducing relapses and progression, you can only judge that after you've compared it to what's happened over time. If you normally have 2 relapses a year, and you haven't had any (or vice-versa), then you can evaluate that over whatever period you would have had relapses in your history. Progression information would come over time too.

I reduced my EDSS by one point over 9 months, and that has stayed stable over 4 yrs. I've had one attack in that time. Prior to LDN, I was having an attack every 3 months, and my EDSS was probably slipping a point a year at the time. I don't know where I would be without it . . . but maybe I would have just suddenly improved and stayed stable. Somehow I doubt it though cause I had been traveling a bad path for two years when I turned a good corner after LDN, and have stayed there 4 yrs now.

Do you think it's not working for you? What's going on?

Cherie

I noticed a huge difference in stamina when I first started taking it. I had energy to spare. Recently, though, I've had fatigue and joint pain (arms and legs). I know LDN isn't a cure and it can't take away all sx but I wasn't expecting this latest episode. I'm just wondering if I need give the Betaseron another try or should I give the LDN at least a year or so. I don't want to give up on it too soon. And.....I won't be having another MRI anytime soon (no insurance :() so I can't use that to measure progression or the lack of.

I'm probably jumping the gun and being too overly cautious but I honestly don't feel as good as I did when I first started LDN. Could possibly just be this bout of fatigue and that will pass. Or maybe this is just my "normal" and I'm expecting too much. :confused:

Kell I went through the same doubts at just about the same timeframe....6 mos on LDN. I expected things to keep improving and expected no setbacks. I was very discouraged, when I still had bouts of fatigue and other sx.

I stopped LDN for a week or so and just got worse. When I went back on it, after a lot of encouragement from peers, I felt better. I discovered, over the years, that I will still have pseudo exacerbations of certain symptoms, usually caused by illness infection or the awful weather (hot - cold - humid?)

I am not disapointed in what LDN has done for me and my MS as a whole. It has kept me stable, with a little falter once in awhile, for the last 6 yrs. I feel better today than I did last year, at this time and that is good.:)

The choice is yours, whether you go back to Beta. Either way, I would still stay on the LDN. I know someone who did well on Both, for a long time.

Whatever you decide, we're with Ya..:hug:

I don't personally base my progression on MRI results; I base it on how much disability I am accumulating over time.

I don't really know how to answer this, Kelly. If you have access to free Betaseron, and feel there's a chance it could help you more, then why not give it a go? If it you end up feeling worse after you go off LDN, you should know fairly quickly . . .

Perhaps wait a few weeks before starting Betaseron, and then you can assess the differences between on LDN, off LDN, then on Betaseron.

I know a lady who thought she wasn't getting much help from LDN, and she went off after using it for several years. I've watched her go progressively downhill and have BEGGED her to try LDN again (it did keep her relatively stable throughout that time), but she is in a funk and just doesn't see it. Maybe it didn't seem to "help" her any more, but it had kept her relatively stable and she isn't now ...

Just be open-minded about your options, please (I will remind you if I notice things starting to slide for you!!!) and you end up on a pile of pills, and feeling/doing unwell. It is hard to assess things yourself when that happens, but I'll notice the difference in you. :D

Of course I hope Betaseron does you well!!! . . . and maybe it IS your ticket.

Cherie

Believe me.....I do NOT want to go back on Betaseron!! I had terrible site reactions to it. It was just the last thing I was on before LDN. I would stop LDN for a while and see if I noticed a difference before trying anything else. And I doubt I'd switch. I was just wondering how long it was suggested you stay on LDN before deciding that it wasn't helping. Besides...I didn't think you could be on an Interferon and LDN at the same time. :confused:

I did notice a big difference when I first went on LDN....but I'm thinking that it was just such a vast change from the way I felt before that it seemed magical! Now I'm used to it. I'm almost afraid to stop taking it because I really don't want to feel worse. The weather affects me so badly.....humidity just whips me. But today was so nice I guess I just expected this episode of fatigue and aches to go away.

I'll give it some more time. Spring isn't the kindest season to me....and summer is even worse. So I guess I'd better get ready for the ride. :rolleyes:

It can make a big difference for people in the beginning, and they do become accustomed to the change fairly quickly. That's why I always try to remember to tell people to write down their symptoms before they go off whatever they are on . . . and as they go along once they are on LDN too.

We do lose sight . . .

But, you CAN always test it, if you wonder if it is helping much ... :) Like Marion, you might find out pretty quickly. I don't think you would be taking a risk of a relapse right away or anything, but at least you would see how much it is helping for symptoms.

Do you have a track record for relapses you can look back on, from when you used Beta? How about a symptom journal, or information on this site that you can look back at? We do have our ups and downs on LDN too ... but if you haven't had a relapse that has added to your overall disability, I'd say you are still on track.

Cherie

Kelly, I hear you on the weather changes. I felt great while the temps were in the 50s and as soon as they got in the 60s and close to 70 with a little humidity, like today, I feel like carpola..:mad: And like you, I am nottttt looking forward to summer.

Let's biotch and complain and make it through, together..:D :hug:

Okay, here's the latest. I have an extremely sensitive area on my back (sensitive to touch) and on my right leg and foot. My right leg is getting numb but not completely. It's done this before. Could this be sx of transverse myelitis? I'm having alot of difficulty walking after first getting up from a lying or sitting position. Once I move for a few minutes it gets easier but my gait is definitely affected. All this happened after weeks of fatigue.

I know I have the EBV in my system and it shows itself every once in a while. I've had mono and Bell's Palsy so I know it's dormant in my system.

I'm also having shortness of breath. I looked that up as a sx of MS and found out that it's quite common.

I also looked up TM and my sx mirror many of the sx listed for that condition, too. I'm not looking for additional things to be wrong with me....believe me....but these sx I can't just ignore.

My vision, which is usually the first sx to present itself when I relapse, is fine. No issues with that. The weather is changing daily here and I'm wondering if that has anything to do with it. The weather affects me so much....but the sx of TM I don't think would be associated with the weather. Or would they?

I hate complaining. It sounds like I'm falling apart but I'm not. I can still walk. Still see. But these sx are hard to ignore. I'm supposed to go to the Neuro on 3/19 but I think I'll probably have to cancel the appointment. It's $185 without insurance and I surely cannot afford that. I'll talk to them first to see if they can lower the charges for me because I really need to be seen.

Wish me luck! :rolleyes:

It would seem it might be an indication of spinal lesion activity, based on my personal experience with that.

Transverse Myelitis is very extreme, Kelly. I went completely numb from the chest down, had no bladder/bowel control, electric shocks plaguing my entire body, paralysis, skin sensitivity to the point that I couldn't handle a wrinkle in the bedsheets or even seams on clothing, etc., etc. . . .

What happened to me is what would likely be considered a fairly classic example of a TM attack, but it is really the severity that determines whether a spinal lesion attack with MS is a full-blown TM, or just spinal lesion activity.

When I get that numbness and fatigue, the first thing I check for is infection of any kind. I get it when I am run down or fatigued too . . . and it usually blows over without becoming any more serious. In fact, I have it now with all the stress that is going on with my daughter. :rolleyes:

It is normally accompanied by excess fatigue and brainfog as well. How our brain's are messed by spinal inflammation is beyond me . . . but it happens for me too. Of course those symptoms are much, much worse with full-blown TM as well.

I know those symptoms are somewhat debiltating, and definitely upsetting . . . but chances are that you are going to just get past this without things getting any worse. Just make sure you get LOTS of rest, and are checked for a UTI/sinus infection, etc.

Cherie

Thanks, Cherie.

How's your daughter doing? I appreciate you taking the time to address my little whine with all you're going through with her.

My very first sx back in 2003 (before I was even dx) was complete numbness in both legs. I suppose that was from a spinal lesion. It lasted about 3-4 months and corrected itself. I've never had it again.

My last MRI was brain and C-spine. I'm not sure if I've ever had my entire spine done. I've got brain lesions and I'm sure I've got spinal lesions.....wonder why they didn't do a spinal MRI, too. Or does C-spine include the whole spine? I'm a real dummy when it comes to all this stuff....:rolleyes:.

I'm continuing to take my LDN. Doing everything just as I did before. I'm probably just overreacting to these sx. I tend to do that at first then settle down and wait for them to go away.

:o

Just wanted to add my sympathies and reassurances as well.

((((((((((((Kelly))))))))))):circlelove:

Hi Kelly,
I know you were asking Cherie,but figured since I knew, I'd help you out with at least one of your questions. C spine is the cervical spine ( neck) only. Then there's the thoracic spine ( mid-back) and lumbar spine ( lower back). I hope your symptoms let up soon and you're feeling better quickly. :hug:
I don't think you're over -reacting, this MS stuff just completely sucks and we wouldn't be "normal" if it didn't get us concerned/anxious, what have you at times.

Thanks very much for the info. I'm wondering why my T-Spine and Lumbar-Spine weren't done.....I'd be interested to know how many spinal lesions I have. I already know I have brain lesions. :rolleyes:

I'm sure this will all pass soon.....it's just the spasticity in my legs plus the skin sensitivity in my back and leg is driving me crazy! I just took 20 mg of Baclofen so hopefully it will kick in soon.

I'll never get used to this stuff. :(

Dangit!
 

I’m not doing very well. Remember how I was without LDN for a week? Well, on day 3 without LDN, I developed what I believe is Transverse Myelitis. I’ve now been back on LDN for ten days and the TM is still with me. It consists of burning (!) areas on my thighs and buttocks. When they aren’t burning, these areas are mostly numb. I also have bladder weakness, which is considered part and parcel of TM. I will never, ever, EVER run out of LDN again. This really stinks! If I call my Neuro about this, he’ll want to see me, and he’ll want to treat it. I don’t want it treated. I just want it to go away.

Marion, I have had the same sx as you except it's on my stomach, back and right leg. It feels numb but still hurts...if that makes any sense. I wasn't off of LDN, though. It just sort of happened. I hope you feel better soon! :hug:

I'm sorry, Marion. It's the changing weather, I tell ya..:mad: I feel a little carpy, myself.

Hang on....Once the weather makes up it's mind, what season it's in, I think we'll be OK.

:grouphug:

Kitty, your posts always catch my eye. The reason for this is that the two snuggly kitties .jpg in your signature was my avatar for many years. I have to say that you have wonderful taste in graphics.
:)

For Those Who Take Thyroid Meds
 

I found this on the LDN website (www.lowdosenaltrexone.org) and wondered if anyone else takes thyroid meds? I take Levothyroxine and wonder if I should decrease my dose. I'm going to talk to my PCP about it.


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.

I've seen tht wrning before, Kelly, but, since I don';t have a thyroid problem, diidn'y give it much thought.

You should ask your Doc....He'll mprobably just tell you to gt off the LDN..:rolleyes: I hope not, because LDN could be helping that condition??

Good luck..:hug:

I'd lower my thyroid meds before I stopped LDN!! I've been really short of breath here lately and that is one sign of hyperthyroidism. This morning I didn't take my thyroid meds (for hypothyroidism) and I can already notice that I'm breathing easier. I'll try not taking them again tomorrow and see if that continues to help. If it does I'll probably just cut my thyroid med dosage in half and see how that works.

Boy.....Can I type or not..:rolleyes::o:D

Well.....I didn't want to say anything but since you brought it up......NOT!! :D :D :p

Been away for a while, so sorry! We are making plans to move AGAIN...this time to a farm in Missouri. My husband is going on ahead of us to build a modest home for us to live in while we decide exactly what we want to do in the future. We have to get rid of a LOT of our STUFF, the home will be much smaller than what we are in now.

Marion, Kitty, Sally...I'm sad to hear that you are having troubles. You have reminded me to get a call in to the doctor to renew my LDN subscription! I do NOT want to be without it.

I've never heard of transverse myelitis...During my last move in December...the left side of my thigh burned a LOT, especially at night. I assumed it was part of the MS and fatigue from moving. Is TM part of MS or something else?

Cherie, is something going on with your daughter that I missed?

Yep
 

Here is a link to an article on the Transverse Myelitis Association called “Transverse Myelitis and the Multiple Sclerosis Connection.”

Happy reading :)

Marion, is this your first bout with TM? I've had the sensitive areas before but nothing like this.....it's almost too sensitive to even have clothes touching it.

I'm not sure what's going on with me but I'd have to conclude that I'm in the midst of a flare. I'm having a terrible time with leg weakness and spasticity. I'm also having foot drop. Really hard to lift my left foot up high enough to prevent dragging it on the floor. My right leg is numb and weak but not as bad as my left one. I'm having spasticity in my hands, too. Especially my numb right hand. How can something be numb and hurt so bad?

I'm taking 20 mg of Baclofen three times a day but I might just up it to 30 mg. I'm supposed to go to the Neuro for my "every 6 month" appointment and I've been keeping a journal of all my sx on the computer. It's just easier to type it in a Word document and then print it out.

I'm still taking my LDN. I'm afraid to stop taking it just to see if I notice a difference. Not sure how much worse I could get but I don't want to find out.....at least not right now! :rolleyes:

It is spinal lesion activity, Kelly, that seems clear.

It also seems clear that you are in an attack. The only part you don't know is how much worse that attack might be if you go off LDN at this point.

I would ride this out, and IF you decide to go back on Betaseron, do so after this attack lets up.

I have have three spinal lesion attacks since getting dx, and the very best one was while on LDN. None were nice though. :(

Cherie

Thanks, Cherie.

I don't plan on stopping LDN. I can still walk, albeit slow and clumsy, but I can still walk.

Honestly, I don't believe any of the DMD's do anymore than LDN. And sometimes cause undesirable side effects.....so I'm sticking with my LDN. I've had attacks while on the DMD's and they were worse than this so I'm taking this as a good sign that the LDN is doing what I need it to do.

I saw your post about your daughter. I'm glad she's doing better. It's so hard to watch your child struggle......I'm still praying for both of you.

Thanks for taking the time to address my issue when you've clearly got bigger issues of your own. :hug:

I finally broke down and made an appointment with the Neurologist for Monday. He had initially decided that I have SPMS, and I really hope this bump in the road isn’t interpreted as a sign that I really have RRMS. I have always been grateful that I was diagnosed with SPMS right from the get-go because that spared me the task of deciding whether or not to take any of the DMDs. Actually, my appointment is with my Neurologist’s Physician’s Assistant. I figure that if I have to decline the recommended treatment (DMDs), I’d rather tell that to the PA than risk a knee-jerk, ego-related reaction from the doctor himself. You know how doctors can be.

Kitty, I have had some of the milder (numbness below the waste, weakness in the numb leg) symptoms of TM on and off for many years (as far back as high school). I had never (well – almost never) had the extreme burning or the bladder weakness before.

I found a dospak of Prednisone and have started that this morning. Hoping it will help ease these sx or at least lessen the residual damage from the attack.

Good luck at your appointment on Monday, Marion. Let us know what they say.

I was seen at my Neurologist’s office yesterday. Since it had been just about a year since I had seen them, they did a pretty thorough exam. This included a “gate analysis” that is taken by walking on this weight-sensitive mat on the floor. The mat is probably 20 feet long, and it is hooked up to a computer that analyzes every little nuance of weight bearing on each step you take, as well as the profile of your gate. A year ago (pre LDN) I had the same tests, and it was really interesting seeing the change. The PA noted improved leg strength, eye coordination, and balance. She seemed to be only mildly pleased with the improvement, though I did see a slight smile behind her poker face. What I really wanted to hear her say is “OMG! What an improvement since you started the LDN.” But since I was refused an Rx for LDN by this doctor, I suppose I expected too much. As I left, the PA said that she was going to bring the test results to my Neurologist’s attention. She hesitated a bit, and then said “He’ll probably want to see this for himself.”

Next week I go for may annual MRI. That should be interesting as well.