NeuroTalk Support Groups - LDN Information & Check In

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- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

Quote:

Originally Posted by tante (Post 375182)

I had wondered how long you had been on LDN...turns out not long at all. Was the discussion here helpful to you in deciding to try a higher dose, and had spasticity been much of a problem for you in the past?

I can go search for these answers if that would be easier for you. I guess it is tacky of me to not try it first, but asking you now might get more information, or a better perspective, now that you've been on it for a while.

Thanks!

I've been on it a month (since 8/25). I was on the 1.5 mg dose for seven days then bumped it up to 3.0 mg and have been on that since 9/1. My doctor told me to wait until I am off the antibiotic I'm on for my sinus infection before bumping it up to 4.5 mg. I think the only thing he said I might experience is increased spasticity and if I did to just go back to the 3.0 mg. for a while.

This discussion was very helpful to me in making a decision to go on LDN. There's many very knowledgeable people here who have been taking it for a long time.

Good luck with your experience with it!!

Thanks, herekitty, I hope your infection goes away soon, and that the increased dose works well for you..
I'm a little afraid of a higher dose with spasticity, but am trying to work up my nerve to try it.

Quote:

Originally Posted by tante (Post 375549)

I'd try it.....if it doesn't work you can always go back to the lower dose.

I got the doctor to call in a different antibiotic for me (Biaxin) so I hope it does the trick!

EEK, I'm allergic to Biaxin.

Feel better soon, Kelly..:hug:

Got my hair cut yesterday. I asked my cosmetologist if she noticed any difference in the thickness of my hair. "Yes!" she said, grabbing a handful at the crown. "It's thicker, especially right here."

It's been difficult to style lately, so I had her thin it down.

Now if only I'd lose weight! I've gained 6 lbs. :eek: I swear I haven't eaten more than I usually do. :mad:

Still have the body aches and dizziness, but no muscle cramps (thankfully). I have had a few random jerks, though.

Quote:

When I say the word "Exercise", I wash my mouth out with Chocolate.

Your Siggy line could have something to do with the weight problem..:p:D

What dose LDN are you on, now? I'm disappointed for you, that it hasn't helped your sx of dizzyness and body aches..:( I have another friend who has been on LDN for 3 yrs and still has bouts of dizzyness....Hmmmmm, but she still likes the other good things, so continues on..:)

Trimming my hair and nails constantly is a PIA, but, I'm glad they're healthy..:D

:hug:

Quote:

Originally Posted by Twinkletoes (Post 375984)

This is going to be good.

I am going to be working the MS Society booth at the Disability Convention and Expo in Hartford, CT, this Saturday. I’ve been working as an advocate through the MS Society ever since I got diagnosed. The people with whom I will be working know me as either a power-chair person, or a rollator person. Nobody there knows that I am on LDN. I can’t wait to walk into that exposition hall with nothing but a big smile on my face, and carrying only a folded walking cane. I’ll probably need to use that cane by the end of the day, but I can’t wait to show off my newfound coordination and balance. I still do stagger a bit when I get fatigued, but improved coordination means that I can right my gate with some semblance of grace. Is it the placebo effect, the Prednisone taper, or the LDN? Only time will tell.

ok finally got my LDN today.. my insurance actually covered it... :confused:

so i will be starting it Monday night.. wife has a friend in from out of town till then and we are having a party on Saturday so i figured may as well just wait and enjoy the weekend.. i mean there is a chance (oh who am i kidding its a sure thing) i may have some drinks at the party so better safe then sorry.

oh one question i have that maybe i missed the answer to in this thread is..
Can you take IVSM while on LDN?

Quote:

Originally Posted by PunkDizzle (Post 376417)

PunkD, there really is no worry about combining a moderate amount of alcohol and LOW dose Naltrexone (and if there is, I'm going to HE!!) :D. I haven't had the same desire to drink, and haven't drank in EXCESS (more then 5 drinks at one time), but that is only because I can't handle my booze at the best of times any more.

I think that the concern with alcohol is the same as with narcotics, codeine, etc; that you may not feel the effects as well, so a person may risk going overboard with those things. Naltrexone, at a much higher dosage, is used to help alcoholics (and drug addicts) withdraw without the same "withdrawal effects", but I don't think it's thought of as dangerous to drink and take LOW dose Naltrexone (at approx 1% the trialed dosage for those conditions).

My insurance (in Canada) pays for it too, as an "exception" drug. They'd much rather pay $20 a month then $100,000 a yr. ;)

IVSM = steroids, right? If so according to Skip's Pharmacy, you can use them. I'm hoping you won't need to though. ;) :)

Cherie

Quote:

Originally Posted by PunkDizzle (Post 376417)

ok finally got my LDN today.. my insurance actually covered it... :confused:

Thanks for mentioning this, Drew. It never even occurred to me that insurance might pay for off-label meds.