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.

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..

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.

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.

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.

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.. And like you, I am nottttt looking forward to summer.

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

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!

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.

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.....

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.