"I may have to reverse your diagnosis."
 

I was diagnosed in June of 2007 and haven't had an MRI since then.

I started out on Copaxone until I was able to get LDN. I've been on LDN since early December. My Neuro KNOWS I wanted LDN but we don't actually discuss if I'm using it because he won't keep me as a patient if I go against his suggestion.

I have already explained in the LDN thread, the wonderful effects that I have had from LDN. However I don't think it occured to me it might slow progression. I think I just felt that was too much to ask for.

With everything going on I just haven't been reachable lately. My poor Neurologist finally emailed me instead. :p

"If you came into my office today I could not diagnose you with MS. You no longer meet the criteria for an MS diagnosis. Your lesions are smaller and you have less than is required for an MS diagnosis. I may have to reverse your clinical diagnosis. Whatever you are doing, keep doing it. If you continue to progress like this for another year, I may consider finding out exactly what you are doing to use it with my other patients."

How do you respond to that? I was speechless.

Wow. That's all I can say. How in the world did THAT happen? :eek:

Oh WOW. Are you serious? That's amazing news!

Sheesh, makes me want to hook up with LDN. :p

Oh Chelsae...how wonderful for you! If only more could be told that same thing.

I daresay we can all rely on you now for a reference for LDN. :D

Thank you for sharing that with us, and I hope your lesions continue to shrink.

WOW! Nice

I don't think I'll ever be told that, it's too late for me, my lesions are not going anywhere. 6 years, 6 brain MRIs and the first looks like more or less like the last, no more, no less. The no MORE is Good enough for me. If I lost a finger in an accident, I wouldn't expect it to grow back, but I'm glad I'm not losing more 'fingers'.

GREAT NEWS!!!!! What's it going to take to get more neuros to believe in LDN? I hope and pray your lesions continue to shrink and you WILL get the non-MS diagnosis!! I'm fully convinced if my neurologist would have let me take it sooner, I'd still be walking.

By the way, Hi Larry! Good to see you again! :)

That's wonderful news, Chelsae! Thanks for sharing.

I started LDN last month. Been experiencing vertigo for the past few days, but the LDN pharmacist says its not likely due to the LDN.

Meanwhile, just trying to hang in there.

Seems like our docs should try the least expensive, most potentially effective drugs first. Don't know why we as patients are having to educate our doctors. :confused:

Something that maybe your Neuro isn't aware of is the lesions do sometimes reduce in size or go away in MS. You probably still have it, if you did have it at the beginning. The LDN will make you feel better, I have found that the Endorphins from chocolate work pretty good too.:)

Very true, Bill . . . especially if the lesions we are talking about are the "enhancing" kind.

We can also go into remission at any time, which is why it is very hard to evaluate the efficacy of ANY drug, especially over the short run. :(

Cool!! Is that Cadbury, or some other brand? I wanna know which type you've found that:

- reduces your spasticity
- rectifies your claw hand
- allows you bladder and bowel control
- makes you well enough to go off several other drugs
- corrects your balance and vertigo
- improves your pain
- reduces your EDSS by one point
- etc.

Oh, and what dosage should I use too . . . cause I might be able to save myself up to $20 a month just by eating chocolate. :Dancing-Chilli:

Cherie

What a wonderful emal for you to receive! That's awesome.

I’ve only been on LDN for a short time (two weeks), but I already have experienced some symptom relief. I hold great hope for future improvements.

How do you respond?

"Thanks, doc, let's just see what happens and we can discuss it if/when the time comes." :D

That's AWESOME! I'd love an e-mail like that from a doc. Even sounds like he knows what you've been up to but doesn't want to admit it. ;)

Hope it continues like that for you.


Cherie, I'm not sure that anything less than $20 in chocolate would work per month. :p

True enough . . . and I'd probably put back on the 30lbs I "dropped" once I got on LDN (and off antidepressants) too. :(

Funny enough, LarryLDN swears that chocolate gets his MS symptoms going . . . :confused: But maybe he is just buying the wrong brand, so I'm still awaiting Bill's input on that one.

Cherie

I've noticed certain things get my sx going. Too much alcohol does. Smoking pot does. Caffeine can definitely get my body humming (not in a good way). So I wouldn't be surprised if chocolate was a trigger for sx in certain people. :)

Smoking pot makes me paranoid, so I "think" my symptoms are worse then they are. :Crazy 2: However, before LDN, using pot was the only way I ever slept or ate . . . so I was using it (very sparingly) anyway.

I haven't drank much in over 5 yrs now, and I used to be able to party with the best of them. I can have a few, but anything more than that and I pay for it for the next week. :eek:

I used to be a salt-a-holic, and now I don't care as much about that. I NEVER ate chocolate until the last two years, and now I crave it regularly. I think that has to do with hormones/peri-menopause . . . but it doesn't bother me to eat it. I don't even put on weight when I do . . . and I do often. :)

Cherie

Sometimes I think to myself, "Was quitting pot a good idea?". I stopped pretty much after I was through University and was getting into the 'real world' of finding a career. Being 'mature' I guess. Now my mom's almost encouraging the idea of starting it again :p.

I wonder if I would have ever progressed to an MS diagnosis and various symptoms had I continued smoking. Food for thought.

Cherie, I also got pretty paranoid on it. I had to take it in small doses to avoid the paranoia and be very careful about what 'kind' I was smoking. Some types (and for the life of me, I wouldn't be able to recall the names now) just made me paranoid, period.

Maui wauie . . . phew!! If the high has anything to do with it's neuroprotective abilities, that stuff ought to cure MS. :D

Cherie

I tried all sorts of combinations. Chocolate triggers SX for sure. Used to trigger attacks.

ROFLMAO!! True. Very, very true!:D

*sigh* Oh I do have fond memories of Acapulco Gold, Maui Wowie (Wauie as you spelled it), Thai stick, hash....... yes, indeed. That was high school, however. Pretty much gave it up when I had kids (2 years out of high school). :cool:

A couple of friends still smoke up and I'll confess to having tried it again just to see what it would do. Man, that stuff is STRONG now!! Yeah, I got high but boy, it magnified my sx and brought some on. So much so that I told my one friend that if I EVER requested a hit again that she was to remove me physically from the room. I'll just sit there and enjoy the smell instead. It's kind of like some pipe tobacco to me--smells good and always did. :o

Talk about MS really messing up your life..... it's bad enough you have to get attacks and deal with sx, but no CHOCOLATE??? THAT is serious enough to have a chat with a neurologist about! :D

That's awesome SL! I don't know you would respond to that due to lesions coming and going in ms, but overall, the email is promising regarding the use of LDN.

Jim still smokes pot per his doctors orders. He even put him on Marinol to help symptoms in between "tokes" because, you know man, it isn't cheap anymore! It is helping not only his clonus and spasms, but his appetite as well. The only downfall is he is more tired now.

BTW, how are the girls doing?

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