Sorry guys I didn't mean to post this and then vanish. Just been really busy with sick kids and my best friend's son starting chemo.

(The girls are okay.... rough few months, hospitals, new diagnosis, etc...but right now they just have a cold. As always you can keep up with their adventures here: http://upwithdownsutah.blogspot.com )

Okay, to clarify. I was not diagnosed with MS until June of 2007. But I had an MRI in April 2004 which showed lesions and met the criteria for an MS diagnosis. I just wasn't told about them because of a doctor who thought he knew everything...which is a whole other story. I got over being upset about that, realizing I couldn't have handled an MS diagnosis in 2004 with 2 BABIES with seizures and a bunch of other health issues.

Anyway, so I had 4 lesions in April 2004. I had 8 lesions in June 2007. I have 2 visible lesions now. Obviously it's possible that they improved and went away between 2004 and 2007 just like they are doing now. But for now I can only look at the 3 MRI's I have. So I will look at this as major progress. Since there was 3+ years of steady downhill....and now things have improved so much... I will just assume that what I am doing is working.

My neurologist knows that I still have MS. But it can't be my clinical diagnosis unless he can PROVE it. Insurance won't cover anything otherwise. So if my MRI has improved and doesn't meet the criteria it doesn't matter how many bad ones I had before. Right THIS second I don't meet the criteria and that's what insurance cares about. I will likely be re-diagnosed with transverse myelitis secondary to probable Multiple Sclerosis.

He said he wants to wait another year.... we will wait a year for another MRI unless I have new symptoms. He said if I am stable or still improving in a year... he will think about using it on his other patients. I really could just be a freak of nature who responds totally differently. It would not be the first time.

And yes, he DOES know that I'm on LDN. It's just not discussed and I've never told him directly. But he knows I stopped Copaxone to try "something else" right after asking him about LDN. I really wanted to stop Copaxone because of insurance purposes. If I lost insurance I couldn't afford it. I wanted LDN and even on the worst months I could always come up with enough money to get that. I just felt much more secure being able to pay for my meds in full.

Anyway, I hope that helps clarify a little. I'm by no means saying I'm cured or anything. I'm just hopeful that maybe this has stopped my progression and allowed my brain to heal itself.

Hi SL,

I have a friend who's been suffering for several years with MS-type symptoms, lesions, etc. After visiting several doctors and getting nowhere, she finally decided to take matters in her own hands and get on LDN.

She seriously debated that because she was afraid it might mask the underlying disease . . . but she wanted to get better more then she wanted a dx.

She saw substantial improvement from LDN, and no further lesions have cropped up. She still has "whatever" disease (just like I still have MS), but she is doing much better then she was.

Cherie

My understanding is that usually if there isn't enough lesions to diagnose MS...they diagnose transverse myelitis. I'm sure there are other things too though.

Good for her taking matters into her own hands.

No, not necessarily . . . or even most of the time.

TM requires that a person have at least one spinal lesion, and that it caused a clear attack. The attack can be mild, moderate or severe, and it will leave a person with very mild disability --> right through to causing them to be permanently bedridden from the get-go:

http://www.ninds.nih.gov/disorders/t...s.htm#41903234

There are about 100 differential dx for MS

http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf

Cherie