This Is MS Multiple Sclerosis Community: Knowledge & Support

I had a neuro appointment today and he had the results of the first MRI I've had since starting LDN last February. I had an MRI just prior to starting LDN and while I don't know exactly how many lesions I had at that time, the report said there was an "extensive" amount. The neuro today said he wouldn't call this latest MRI extensive, he would class it as "moderate". Unfortunately this new neuro didn't have the actual films from my previous MRI, just the report. I moved from one province to another and the old clinic sent my records but no films, so I'm not sure how much accuracy there is in the doctor's assessment. Although he did say today that it appears a couple of spots noted on the last report are gone, but there are new ones in their place.

I met this neuro a month or so ago and did not like him at all. He was very clinical, a bit of a jerk, told me to get on a CRAB treatment before things started to go downhill...so I wasn't in a good mood at all about having to see him today. But he was actually very nice today, compassionate, human...maybe I just got him on a bad day before. But I quite liked him today which was a nice surprise. He still wants me to start a CRAB, but wants me to go away and think about it, wants me to come back in about a month and talk things through with someone at the clinic (which I don't really want to do, I'm very private, but agreed to do so). He says he wants me to get a bit better adjusted to this whole diagnosis and then work on a long-term commitment to life-long treatment. Anyway, we'll see, but all things considered a much 'easier' appointment than before.

As for the LDN, I intend to keep on it, so if I do decide to start a CRAB I'll try Copaxone (because it is my understanding that it is the only one that is compatable). I don't know if it's doing anything...I guess it's not hurting anything...hard to say, no attacks or trouble since my initial one in 2004, but that could just be my natural course, you just never know.

*sigh* It's enough to not get worse.

Hi, I have been on copaxone for 2yrs. My MRI in 2005 was better than the first one in 2002. I was bedridden in 2002 and feeling pretty good 2005 so that would make sence I guess that my MRI was better. I just strated LDN and having trouble with it so I can't say yet how they work together. It's such a crap shoot sometimes trying to figure out what is best for treatments. I think they say the ABC's help about 40% of ms'ers. All doctors will think a person should be on a ABC, because thats what they have been taught on how to treat ms. If you MRI's are worse or you are feeling worse you might what to add it to your program for 6-12 months and see if it helps. I didn't have any side effect on Copaxone other than added fatigue. Take care, jeanief

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Jeanief

Thanks for your feedback Jeanief, I do appreciate it. I have to go back to the clinic next week for the "talk". I also contacted my old clinic to ask about having the films from my pervious MRI's sent to my current neuro (I want to be able to have a true comparison), and they told me this current clinic has to contact the x-ray department of the hospital where I had the other MRIs done and make that request. So I will ask them to do so and see what happens. I'm glad to hear you managed copaxone quite well (although too bad about added fatigue). I hope the LDN does well for you and helps eliviate some fatigue if nothing else. I have been fortunate with LDN and haven't really had any negative side effects. Of course I can't say I've had any measurable improvements either, but I think my ms is relatively mild right now, no real or lasting trouble for a while. I've read that many people find their symptons get worse before they get better with LDN, so hang in there, and I hope you feel some positve changes soon. You're so right about everything being a crapshoot, and it's good advice to "measure" things again within 6 to 12 months. My plan is to try copaxone with an agreement from my doctor for a MRI six months into treatment to take a look at things.
Thanks again for your feedback, and take care.

Thanks Mary for sharing this important information. MRIs results tracking LDN users are (unfortunately) as close to a clinical trial for LDN as we're going to get for a long time, maybe ever.

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