This Is MS Multiple Sclerosis Knowledge & Support Community

I've just been to the neuro, asked to have my films from a previous MRI (taken just before I started LDN) sent to where I live now to compare them against films from a MRI I had in Jan. (after 11 months on LDN).

There were some new lesions, some of the same ones, some have shrunk, some have seemingly disappeared.

So, all in all I'm not too sure what to think. I've read that some people have seen great results in their MRI's after being on LDN, but that doesn't appear to be the case with me.

That said, I haven't had another attack since my first one almost two years ago.

The doctors want me to go on a traditional treatment but I am still resisting. I don't have a logical reason to resist, I just don't want to start injectables. It's hard to accept that course when I'm having no real trouble. I have some bad days, some transient symptons, but no attacks.

We agreed to another MRI in the fall to look at things again - their feeling is if they keep showing me the evidence I will change my mind and start the treatment they are recommending.

Mary,

Thank you for sharing this very important information. Of course, lesion load does not strongly correlate with disability progression, but since it is often used as a marker for clinical trials in MS, this is very, very useful.

I truly appreciate your willingness to help others through your experience.

Hi there....one of the LDN group members posted this rather interesting thing about MRI that I thought I'd copy and paste here...interesting to say the least.....looks like we should not be putting so much stock in MRI;s. I know I don't.

"About a year ago, my husband and I went to a MS conference. A great local doctor spoke basically about how we really know close to nothing about MS and how it works and how to truly fight it. It was so refreshing to finally see a doctor admit that! ;) Anyway, he was heavily involved in various research projects and shared some great insight with us. The one thing that stood out STRONGLY was a series of MRI pictures..He had MRIs taken each month for about a year with a couple of different patients. In one patient, there was relatively no change during the time, but you could see a couple of lesions.they stayed basically the same. In the other patient, it showed masses of lesions, then a month later, those ones cleared away and nothing, then the next month lesions in different places, etc.it was constant change. Then he explained that the first on was someone who was fine and as the study progressed had additional problems and exacerbations. The one who had so much change going on he explained was someone who was having NO ACTIVE symptoms or any problems with their MS in any way. Their situation stayed the same over the course of the study! It was SHOCKING to us..I'm sure it would be to most doctors I know, to tell you the truth! He pointed out that basically, the brain is in constant change, MRIs can help with some things, but they are entirely unreliable and we need a better method. So now I don't really care what my MRI says. It was helpful to lead to my MS diagnosis which was then confirmed by a spinal tap, but now I just can't believe them. I know I feel better since I began LDN last year and I know that all other potential drugs for MS scare the *&%)*out of me, so I plan to stay with LDN 'till there is a cure. In the meantime, I get a kick out of hearing about the latest study or some new wonder drug..I believe that each needs to find what works for them and we al need to have hope for a cure someday. Other than that, I'm happy with my basically no-side-effect LDN and encourage anyone considering it to give it
a chance.

Christine in Las Vegas "

I have been on LDN @ 4.5 mg for around 3 1/2 years now and I have had brain MRIs done during the time I was on LDN. They showed "a couple" of new lesions.

I have been symptom free for this entire time until early May when I had a relapse.

I still believe LDN has helped me and may actually address the disease, but the fact is we just don't know and its an awfully large gamble. There are indeed 2 clinical trials for LDN in MS running now, one in San Francisco and the other in Italy. Neither is doing time series MRI so I don't think either trial, whatever the results, will tell us much more than we already know about LDN, which honestly isn't much other than anecdotal evidence.

I'm starting copaxone this week, and will stay on LDN also.