This is what they do to everyone, SCARE them into trying a mainstream therapy, even though it is obviously not working for you or you wouldn't have this "activity" (you've been on them all along :Ponder:).

Ok, so let's just see what happens from here... :cool: and I would love to be a fly on the wall if you were to go back to "visit" in a year from now. :p

Here's hoping LDN is your ticket. :hug:

Cherie

Well, I guess if you are normally still having relapses, it has to be RRMS or PRMS. I just remember your posts from MSW a few years back, and I thought I recalled they had you in the PPMS ... probably just my memory playing tricks. :D

So, when should you be due for another attack, if they are 6 - 8 months apart?

Please treat infection right away though . . . LDN will not stop those attacks. :(

I'm glad to hear it isn't an anxious-type of energy, and given that, it sounds like a "normal" LDN side-effect to me. :D One warning though; DO NOT OVER-DO THINGS JUST BECAUSE YOU CAN!! No roller coaster rides or trampoline tricks that will jar your spine, and be prepared to REST to catch up if you do have a very active days. We can still crash on this stuff ...

Cherie

I will try to remember to remind you, because I am very interested. Thanks again, Cherie. You are so generous with your knowledge and time. I appreciate it.

Do you have to stop taking the LDN temporarily for the surgery?

You are so right about this! :I-Agree:

I need to be better at documenting so that I have a record as well. Just thought of that.

The LDN should be here any day now! :Head-Spin:

Wow, the discussion went back almost three years, and I had a hard time finding the information. In fact, the forum where he posted it crashed for about 3 months a few summers ago, so it took a pile of googling to find bits and pieces of this reference. :eek:

So it seems it has to do with "Glutamate excitotoxicity being an important mechanism in autoimmune demyelination", and that was described in the following link:

http://www.biomedexperts.com/Abstrac...iple_sclerosis

When I asked which products might help us, he responded with "Current drugs (CRABs) generally seem to work by preventing inflammation, yet disability seems to be more a result of neurodegeneration. Glutamate excitotoxicity seems to be a factor in neurodegeneration."

Some products that he identified as potentially helpful were:

- Riluzole; drug already approved by the FDA for ALS and inhibits glutamate, hence is neuroprotective.

- Cannabinoids inhibit glutamate.

- LDN also serves this function.

- Vitamin D

Also, in my search I found one of the articles on inflammation perhaps being part of our "healing process":

"However, it should be stressed that inflammation does not have only a detrimental effect in MS. In fact, parts of the inflammatory events are crucial for the control and conclusion of the acute phase of damage and it is probable that they actually favor regeneration and recovery"

http://cat.inist.fr/?aModele=afficheN&cpsidt=18133960

Of course, there's always information to contradict everything we hear somewhere else :rolleyes:, but thinking "inside the box" hasn't worked, so I'm always open to new ideas. ;)

Cherie

Oops, forgot to answer the question about LDN and surgery....

At first the anesthesi... said I shouldn't take it because apparently they always use narcotics WHILE a person is under. She said the anesthetic only makes us sleep, it's the narcotics that stops the pain (while we are sleeping).

She asked what happens to me if I don't take LDN for a day, and after explaining that :eek:, she said they would just jack up the narcotics a bit instead to combat the effects of the LDN. She's not too worried about it because it will almost be out of my system by the time I have my surgery anyway (about 14 hrs after taking it).

BTW, I knew we couldn't use codeine either with LDN (so no Tylenol 3), but she told me that codeine IS a narcotic (when I said "I can't use codeine or narcotics"). I never knew that.

Cherie

Very interesting...we will think happy thoughts for you.

And thank you for the information. I have some reading to do. ;)

howdy all sorry i have been distant, been thinking about going back to 3mg for a couple weeks, Deb and I have discussed it, with an outside influence i decided last night I would see, my legs have been bad lately and if yall recall that was the last thing to feel better when i started LDN, well that is gone the pain is back big time and I really dont want to add another med so shall try 3mg again and so far I woke at 8 ish , pretty late for me but am not tired yet so fingers crossed,

I hope this finds everyone doing as well as can be, and gobble gobble

I am really surprised.
 

I am really surprised. Due to poor planning on my part, I ran out of LDN yesterday, and didn’t get my refill until today. So I was without LDN last night for the first time since I started taking it. I was fine this morning, and figured that missing just one dose probably won’t do much of anything. Well, I was wrong. The very first MS symptom that LDN helped with was my tremors. Oh how quickly I forgot what it felt like to have difficulty controlling my fingers/hands/arms. My intention tremor is back, not full force, but very noticeable. In fact, I am having problems typing, which is something that I haven’t felt since I started LDN. What a luxury it is to be able to take LDN tonight, and know that I will be much improved in short order. I guess being reminded of how things could be much worse is a good idea now and then.

Well, sorry this is gross, but I started to go to the bathroom a little today. I need to go a lot more. That is my goal for the next week or two. My legs are week. I think if I got my digestive system working I might feel better. Boy, they are calling me at USC trying to get me back on Tysabri. I feel it's for the money.