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MRI & LDN
Posted: Fri Jan 30, 2004 6:35 pm
by september1968
Have any of you had an MRI done since starting on LDN? While I realize scans alone do not determine if your doing better, it might be helpful to getting a study going and promote LDN if someone had that actual documentation they like.
Also, where could I find out definitive info. on using Avonex & LDN?
Actually, I wouldn't be opposed to switching back to C & doing LDN, if I could find someone to subsribe it.
The Neuro I am seeing now is my second one. He switched me from C to A after only being on C for 1 month. Must be a kickback. They have my head spinning. Only dx for 3 months & already been on 2 different treatments.
My system has not really adjusted to well to the Interferon.
Posted: Sat Jan 31, 2004 9:05 am
by LarryLDN
I've heard of 3 people having MRI's after being on LDN. I have been on LDN since 4/17/03 and every visit ask my neuro for an MRI. My next visit will be in May, so hopefully I'll be able to get an MRI with comparison to the previous 2.
I don't know where the MRI results of those other 3 were posted, but they were all positive reports showing some improvement over the previous.
The 2 MRI's I had were 6/02 and 1/03, which were identical, but both prior to starting LDN. The only med I've ever taken was LDN, so my results will be a comparison to Nothing Vs. LDN Only.
Posted: Sat Jan 31, 2004 2:49 pm
by Ptwo
One thing to keep in mind is that mri's are just a snapshot of what's going on on that day. Lesions can come and go and a lot neuro's think a better gage of progression is your disability score.
Peter
Posted: Sat Jan 31, 2004 6:33 pm
by LarryLDN
Thanks Josephine.. those are the ones I was referring to.
Hey, Ptwo, how's it going? What disability score are you talking about? The EDSS?
Posted: Sun Feb 01, 2004 2:54 am
by Ptwo
Hey Larry, EDSS or Kurtze whatever the doctor prefers. My niece has a very active case of ms with lots of new lesions but an equal amount of repair work going on. The local ms center has been giving her mri's every 3 or 4 months and say they've never seen remylination like what's going on with her.
The thing is, even though the lesions are repairing themselves and disappear off the mri she is still stuck with some of the symptoms those lesions brought out. So one of the ways they monitor her progression is for the neuro to put her through the regular testing and give her an EDSS score.
It is comforting to see that there's been no change on mri after a year or two (as mine was 18 months after starting copax) but you have to wonder if you're getting the whole picture. Peter
Posted: Sun Feb 01, 2004 9:39 am
by LarryLDN
I don't think we ever get the whole picture. I think, as much as we think we know, we know as much about the human body as we do about the soil on Mars.
My EDSS has gone down, that much I know.
So the best gauge is how you feel and how it seems to your neuro? Interesting.
Posted: Sun Feb 01, 2004 12:44 pm
by Ptwo
My EDSS score has also gone down, my neuro thinks I'd be doing just the same copax or not. As the saying goes, the course of disease is unknown.
Posted: Sun Feb 01, 2004 5:55 pm
by hotpepper
I hate to sound dumb, but what is LDN? I have been on Avonex since being diagnosed in Jan.2003. Thanks for any info on managing the side effects. In the process of finding another neuro. Mine does not give a lot of info.
Posted: Mon Feb 02, 2004 12:03 am
by crispy
Hi hotpepper,
I have been trying to get on LDN since I first read about it about a month ago, it certainly seems to work for many
Check out the LDN homepage here:
http://www.lowdosenaltrexone.org/index. ... naltrexone
All the best,
Chris P