hi lilly,

i agree with trying to predict the future will make you crazy. i like to tell people that no one knows what the future holds, even healthy people.

the nature of MS is that it's a non curable, progressive disease. it's also an individualized disease. we're all different.

meds are a personal choice/decision. i was dx'd at 53 and i'm 65 now. i took copaxone for 10 yrs and have been stable. symptomatic but still walking and driving. because of that i made the decision, along with my dr, to stop the med. knock wood, i'm still ok. i know it could change but it's not worth worrying about until it happens.

i try to take one day at a time. just deal with what's in front of you. worrying about being in a wheelchair 20 yrs from now is just too exhausting and won't accomplish anything.

try to make informed decisions. pick drs that along with you will be your best team. i find having a plan in mind gives me control and makes me feel more powerful rather than helpless and afraid.

you've made your plan with the LDN. give it some time.
i hope you do better. let us know.

I finally took my first does of 1.5mg LDN last night and had NO reaction to it at all, so this was good news.

Since I had no reaction would I be stupid to take 2 pills tonight so that I get 3mg? I'm really uncomfortable taking only 1.5mg as I'm worried it is not doing anything beneficial in such a super teeny dose. I have an appointment this Friday with another MD who knows LDN very well (this MD also used to be a radiologist so that is a huge plus!), but I was wondering if I should up the dose in the interim you think?

Also, I actually have a 3rd new symptom that I didn't mention before. Past 2 weeks I've been getting up to pee like a race horse 5 or 6 times a night! I know MS can affect the bladder. This is yet another disappointing sign Tecfidera was NOT working because I went from being 100% asymptomatic past 7 yrs to getting hit with 3 new recent symptoms almost all at once!

I'm not allowing myself to drive myself crazy anymore with googling things constantly, but am I correct in thinking that tremor most often happens in more advanced MS and is a sign of progression? (I've had MS for approx 12 yrs). Or do tremors also happen in RMMS very early on?

Thanks for all the replies

Aren't you supposed to slowly work your way up on the dosage of LDN? I would do whatever the doctor specified on the Rx. Don't rush your way thru it.

MS does what it wants, when it wants, and where it wants. I don't think specific symptoms only happen once a person progresses to a certain point.

I think there's physical therapy exercises that are supposed to help with things like tremors. Talk to your doctor.

Ya, those are my thoughts exactly. I don't want to mess around taking something that is as effective as a sugar pill even for a few days. I must not be sensitive to it because I had NO reaction at all to 1.5mg.

My MS is rather active (3 new symptoms, not good!), so I really feel uncomfortable taking something that I highly doubt is effective... referring to 1.5mg. I think I might take 2 pills tonight so I get 3mg, unsure.

This is depressing that I now have to pay this new MD $375 (that is their cost for office visit) because they don't take insurance and I'm poor right now. The prior MD (who only cost $65 for office visit & prescribed me the 1.5mg LDN) I saw last week was awful. He told me MRIs (even without contrast dye) are detrimental, didn't know what gelatin is and told me he would REFUSE to increase dose from 1.5mg to anything higher unless my MS did poorly on that small dose. I almost got into an argument with him (he got very uptight when I politely questioned him about my concern regarding dose) and he told me if I don't follow his rules I need to go somewhere else, so that's exactly what I'm gonna do! This is why I'm now seeing another MD this friday.

I would, but that's me. Anything less than 3mg is dumb,
unless you are super sensitive. See what your new Doc says.

NOTE...Make sure that the pharmacist who compounds your LDN, uses
pure naltrexone powder and doesn't just grind up naltrexone pills.

SallyC,

Thanks, I'm using Skips Pharmacy. Everyone tells me they are really good. If you google them you can see the pharmacist there speaks at conferences regarding LDN for MS, so it appears they know it well which is good news.

I think I'm going to take 2 pills tonight so I get 3mg, because I don't see the point of 1.5mg, especially since I had no reaction to it... or I'm going to have to go back on tecfidera in the interim until I see the MD this friday. I'm SUPER uncomfortable taking only 1.5mg... very concerned it will cause some potential problems. I have way too many lesions to start messing around like this. I Know I need to be on something and I don't want to be popping something that is potentially totally ineffective.

This way I can bring up my concern to this new MD I'm seeing and hopefully he will then give me the go ahead to take 3mg since I had no reaction to 1.5mg. So it looks like I'm going to go back to taking tecfidera in the interim even though I really don't want to! I just stopped tecfidera 2 days ago actually.

I also use Skips. They're the best.
Good luck!!

The heck with this, I think I'm going to take 3mg tonight. I keep reading how so many others started 3mg of LDN:

Quote:
=======
"l have been taking LDN for about 3yrs. l noticed benefits almost straightaway - but l did start on 3ml. l have only to miss one days dose to notice a difference. My MS has not progressed since l started taking it - l now take 4.5ml daily."
=======

I REALLY do not want to take tecfidera in the interim until I see this MD on friday as it gave me leukopenia (WBC below the safe range - even the "fine print" on this drug says to STOP taking it if that serious side effect happens!). My neuro is irresponsible for telling me to continue on tecfidera considering how bad my bloodwork was from it.
I notice the above quote I included was referring to "ml" rather than "mg"....so it appears that person was taking liquid LDN?

Thanks.

EDIT: If I'm still alive tomorrow after taking 3mg I'll post here and let you know how it went

It took about a week for me to notice that the LDN was having an effect and that was at 3mg. It may take a while for it to have an effect for you as well, so don't expect your symptoms to miraculously change overnight.
I strongly agree with Sally and your hunch. Take 3 mg.

With love, Erika

Thanks for all the responses, you guys have been very helpful.

The decision has been made. I'm taking 3mg tonight and will report back in the morning if I had any reaction to it (meaning if I have any "bad" reactions to LDN). Thankfully, I had no reaction to the 1.5mg, so hopefully 3mg will be same).

EDIT: Erika, are you only taking LDN or other MS drugs as well? Sorry if you already answered this in the past recently, I don't recall.