Question for LDN patients:
 

I’ve only been diagnosed for a few years, but my annual MRI has always had the same “lesion count,” that being “too many to count.” In other words, my MRIs are stable. It is almost time for my annual MRI. Since I have enjoyed such wonderful (though partial) relief from my MS symptoms since I started LDN (September, 2008), I am wondering if there will be any change in my MRI.

Have any of you (us?) had MRIs taken both before and after starting LDN? Was there any change? Better? Worse?

Hi, Marion! I haven't been on the board a lot these past few months so I was very happy to see your LDN update accompanying the question! That's so great that it's been working for you relief-wise! Good luck with the MRI! :hug:

Bearygood, if I am not mistaken you were somewhat instrumental in my decision to go for an LDN Rx. It is really good to see your smilin’ screen name. Yes, I am doing really well. I feel very fortunate.

I haven't had an MRI in over 10 years and I have been on LDN for almost 6 yrs. I just never saw the need for another MRI. I pretty much knew that my MS was still there, but, responding well to LDN.

Thrilled for you..:hug:

Marion, thanks for asking this question. I have been thinking about trying LDN for awhile, but have not been entirely convinced that it really helps. (I have read the two studies that have been conducted on LDN and the personal accounts of several individuals). However, I have not seen anyone refer to their MRI's after going on LDN.

Except one person, everyone that I have heard of, that has had a MRI, has had zero to extremely little activity since they started on LDN.

Two that come to mind, from this forum, are LarryLDN and PrettyPearl(girl?). Both had great results. Polar(express? ~ can't remember the last part her nickname at the moment) also had one recently, with not such great results. She is the one person that I've heard of with bad results, but I don't know how long she was on, dosage, whether she stayed on consistently, or . . . ?

Hopefully they will come on and tell us about their experience.

My neuro has always been of the opinion that there is not much point in getting a MRI if I have remained stable throughout this period. I suspect a lot of neuro's have this approach, no matter what med we are on ....

I didn't have a MRI before starting on LDN, and the one I had years before was without contrast. I don't really have a "baseline", but I am getting another MRI after being on LDN for 4 yrs now. The purpose is mostly to evalute my spinal lesions against NMO/Devics though.

Cherie

i had a before MRI... i will not be getting another one for about another 8 moths.. i hate MRIs but i am pretty sure (not to sound cocky) that my next MRI will show that LDN works.. and the only reason i am doing the next MRI is so i can look my neuro in the face and say "i told you so!" because she refused to give me LDN so i had to get it through another Dr... heck ill be a test pig for this med because it really seems to be working good for me.. and ya know what... even if i do have relapse it was happening to me on all of the CRABs... if i don't and i am stable after 1yr then i would hope my neuro would think twice about RXing it to ppl..

but like so many Drs I have seen i am sure she will have some crack butt excuse to put down LDN.. :rolleyes:

I haven't had an MRI in quite awhile, but as Cherie said, my neuro thought it wasn't necessary since I seem to be quite stable. In my mind, it's totally due to the LDN, around five years, but I just wish he had agreed to it sooner before I became attached to this "chair". He has prescribed it for others since. Glad to hear it's working for you. Did you see the article in the Spring edition of Momentum published by the NMSS regarding LDN and the up-coming clinical trials? I was totally shocked!

Thanks for mentioning this article, Judy. For anyone who wants to see it, you can find the magazine up online at: http://www.nationalmssociety.org/mul...-09/index.aspx (scroll down to the Healthy Living section). The LDN article was written by Bowling of the Rocky Mountain MS Center. They mention the studies in SF and Italy but unless I missed it, I didn't see anything about upcoming trials except mentioning the need for them -- maybe that's in another section of the magazine?

I'd be really curious to hear opinions on the article from those who are on LDN.

Thanks, BG. See my opinion in the LDN sticky thread..:hug: