I called and talked to Skip today.....He said it was fine to take all three in one mouthful.
Right now the neurontin is not helping me to sleep....my legs just ache, like a toothache, it is terrible. If the Neurontin would take away the leg pains, I wouldn't take the Zanaflex. If fact, that is what I tried last night, but had to get up around 2 and take the Zanaflex. Maybe when I get to a high enough does of the Neurontin I won't need the Zanaflex.

Has sensory returned for some of you or just stopped losing it?

I've had no changes to my sensory issues but my heat intolerance is drastically reduced and I have way more energy. About six months before taking LDN I began having trouble with my right eye being very dry. After a few weeks on LDN it returned to normal. I didn't change anything else and thought I'd just have to live with it. Bonus.

I've had no progression of my sensory stuff, but it wasn't progressing before I started LDN a year and a half ago.

C

all great news Carol..

still have the numbness and tingling in the legs and arms, worse when I lay down. MS hug is better in the day and worse at night too. Same with the burning legs and feet.

So I guess LDN helps in the day, but wears off a few hours before I take it again, hence the worsening at night.

They say blocked jugulars are worse when laying down so maybe I will get a surprise with the CCSVI. However, it all remains to be seen as time passes. I will continue taking the LDN. It helps my balance. I stopped running into walls.

Nothing sensory has worsened on LDN, some got better, like my thighs pain and spasms. I had only one relapse when I usually get two a year.

@Carol, so happy to hear you're doing okay. Your energy and eye is better, that's great. Do you live in a year round warm/ hot location?

It's so cold here I don't remember my heat problems, but I don't sweat so I can't tell right now anyway.

My energy was better until I got zapped with the Flu and now a cold. I'm glad your dry eye is gone. I have dry eye in my right eye too. With this cold it is not dry, nor is my nose.

I haven't had a cold in two years. I have been on LDN two years. I started Dec. 2008. I think I'm a bit holiday stressed, or overwhelmed. I think of snow and cringe. Nice to hear from you.

Hi Lady,

I live in a fairly moderate climate, just north of Washington state so similar weather to theirs. We can have some pretty warm weather in July and August. It wasn't just the weather that got to me - it would also be when the kitchen heated up cooking a large dinner, doing a lot of housework, visiting someone with a warm house, driving in the car with my husband... In the middle of cooking Xmas dinner, I would often have to go and stand outside to cool off.

Until last summer, I don't remember when I let myself get hot enough to get sweaty. We had some really hot days this past summer and I sweated a lot but I didn't wilt. Prior to LDN I would have been on the couch in front of the AC, barely able to think. Last summer, other people were complaining about the heat before me and I was able to function through it all. That never happenned before LDN.

We're having a cold winter so far and it's supposed to be the coldest and snowiest since 1996. We've already had our first snowfall and we're just not equipped for snow here in Victoria. I feel your pain. I stiffen up when it's cold out.

I hope you feel better soon. Getting sick at this time of year is the worst! There's way too much to do.

C

Hi All, just checking in, after the rush of the holidays. I know, it's not the New Year yet, but I don't celebrate that event, anymore.

I made it thru all the excitement, anxiety, depression, stress and fun of Christmas. If it weren't for LDN, I'm positive I'd be in the middle of a flare, in the hospital with exhaustion or, at the least, sick with the flu bugs, to which I've been exposed.

How are you all, my LDN buds?

Thank you Dr Bahari and RIP.

I've been doing alright. Had a cold but managed to get over it without incident.

I've been having some strange sensory sx lately and just left a message for my Neuro's office. I think it might be a painless migraine. I've been having big green splotches in front of me whenever I close and reopen my eyes. And my ears are ringing. None of it is painful but it's just hard not to notice.

I've noticed that the spasticity in my legs has gotten worse as the weather has gotten colder. But, I'm another year older now....so that might have something to do with it, too.

I'm still taking my 4.5 mg. dose between 12 - 3 AM. I guess the only way to know for sure if it's working is to stop taking it and I'm not goin' there!

I was dx in Jan 2010 with RRMS. Also in Jan I had an MRI that showed approximately 10 lesions. I chose not to start a DMD and went with the LDN. I have not missed more than one or two doses since starting it.

I had a new MRI in October.....but just saw my neuro today. He said the current MRI showed 5 new lesions in my brain.

He is the one that has prescribed the LDN for me, and was very current on the research......however, today he told me that the most recent studies are showing that it is not working for MS patients.

Now he wants to begin Tysabri......

Anyone else had this experience with LDN?? I was really hoping and praying that it would work for me! Things are getting worse, so I have to do something else.

I'm so sorry Daisy. LDN, like any other med, including Tysabri, doesn't work for everyone.

I hope Ty is your magic bullet.

Talk to Riverwild and others in the Tysabri sticky and all my good wishes..

Let us know how it goes.