Well, folks, I've been popping 4.5 mg. of LDN for a year now.

But I don't know if its slowed progression or not. *sigh

A year ago my left hand was pretty numb (can still use it to type). Today my right hand is feeling much the same as the left. And my lips and front teeth are fairly numb and tingly. And my feet are number than they used to be.

Wondering if I should go back on a DMD (took Copax for 9 months). Think I'll make an appt for an MRI first. Dumb disease anyway. Wish there were some clear and obvious answers!

I'm sorry Twinks.. LDN is not a cure, but I don't feel as if I've progressed, even though I still have symptoms that come and go and some that have stayed.

The truth is...I just feel better and stronger while on LDN. My DD, who scoffed at it, even though she used it, is now a believer. She had stopped for about a week, thinking it wasn't doing anything and had a relapse.

I'm not going to tell you what to do. You do whatever you feel is right for you, Girl and whatever that is, we will support you.

You could add a DMD!!

Hey TT,

So has your right hand/mouth and feet gotten progressively worse over this year, or is it just recently bothering you? Are those NEW symptoms for you?

Have you been checked for any kind of infection? I had a relapse while on LDN that lasted about 9 months, but I found out later that it was due to an untreated infection in my tooth under my cap. Soon as I had it removed, the relapse let up ... although I was left with some numbness/damage from that one.

Do you have spinal lesions that you are aware of?

If you have the option to take Copaxone too, why not do that? Double protection is a good thing, right?

Cherie

Good news!!

I had intended to start LDN ASAP in June when I was dx'ed but let some other factors get the better of me.

3 weeks ago I had an appointment with Dr. Bihari (yep, the founder of LDN therapy) which got cancelled indefinitely.

After what seems like ages of waiting I got an appointment with another phone prescriber and my script has finally been called in!!!!

I had a yucky day yesterday and today my numbness is a little worse so this is the best thing that could have happened to me today.

The physician I talked to said that in 8 years of prescribing LDN, the vast majority of patients have NO further relapses. A small number have occasional small relapses that they report as being very mild. It kills me that this drug is not more well known, researched, and promoted.

I still have my untouched box of Copaxone in my fridge, so I'll have to think long and hard about what to do about that in the coming months. For now I will sit back and see what LDN can do.

Good luck! I'm so excited for you.

I'm coming up on my 1 year anniversary with LDN (and nothing else) and couldn't be more thrilled! I started taking it on 8/25/08 and have never looked back. I agree with you......it should be more widely publicized. Just proves that a treatment doesn't have to be ridiculously expensive or have painful side effects to work well.

WooHoo PL!!!!! Keep us Posted,

I think Dr Bihari is just getting too old to take on new patients...JMO,

Took my mum to my GP yesterday who said that she didn't feel comfortable prescribing a drug (LDN) that my mum's own neurologist wouldn't prescribe. This makes sense, and maybe I shouldn't have told my GP that Dr. T wouldn't prescribe it, but I gotta be above board on all of this stuff. Then I asked my GP if my mum could get a referral to a neurologist that I understand prescribes LDN.

After this appointment, I immediately dragged my mum over to see this Dr. D yesterday, as I had an appointment myself, and my mum's referral to Dr. D was faxed-in while we were in the examining room. Good timing.

Dr. D will NOT prescribe LDN for my mum though.... Frustrating, yes, BUT she did say that she'd "advise" the GP on HOW to prescribe LDN. Dr. D also added that of the 50 patients she has put on LDN over the past few years, only ONE person has stayed on the drug. Hmmmm.... Based on what I'm reading here, I find this statistic rather confusing.

So, yeah, this circuitous route might take a bit longer, but we are making some headway. Slow headway, yes, but headway nonetheless.

Will let you know what happens if/when my mum starts the LDN.

One last thing: any advice on liquid LDN vs. pill form?

Thanks -- and take care

TL

thanks!

Yeah, Sally, I hope everything is okay with him, I was concerned when they said that he'd have to call off all appointments indefinitely. I was eager to hear from "the man" about LDN and ask him all the questions I had, but the main issue is that I 've got it on the way.

Hello

Where is "the man" located?
Maybe I should take my mum to see him, if and when he returns to his practice....

Thanks

TL

Hi TL and welcome!

I hope you get LDN for your Mum. Doctors say all sorts of things to try to get you to use other meds, but if you are persistent you will get the medication for your Mum to try. Good Luck to you both.

Hi PL,
Good news indeed.
I am glad you got the script called in and will be starting LDN soon. What dosage are you starting on? Let us know how you feel.

I noticed more energy at first and then I felt better and better and didn't notice it until I looked back, to where I was before trying LDN. I could see so many of my problems had gone away. It is subtle at first, but greater in the long run.

Kitty, Happy one year Anniversary on LDN. Good for you girl!


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