I am just popping in to say hi from the road. We spent some time in Jamaica, and it was waaaay to hot for me! In spite of it, I didn’t have any symptoms rear their ugly head. Even though I don’t think it was much over 85F, I absolutely poured with sweat all the time we were over there (except when in the rental car with air conditioning). We stayed with friends who live there, and they didn’t have air conditioning. I guess they are used to it, and see no need for it.

So now we are driving to San Diego, where we will fly to Hawaii. I haven’t had to use my power chair at all, and only used my rollator in the airport. I have decided not to take the power chair to Hawaii at all; only the rollator. I am feeling stronger than I have felt in twenty years, so it really is the best time ever for this trip. The improvement in my mobility since I started the LDN is nothing short of spectacular. Don’t get me wrong. It isn’t like I don’t have MS. But it is like having a repreve of sorts from the worst of the symptoms, and in general I am stronger on most days.

The following picture was taken at Juno Beach, Florida.

Marion,
I'm glad you're getting a break from the worst symptoms. You sound like you're having a great time. Enjoy Hawaii!

That is inspirational news Marion. Nice to meet you. I love the picture of Florida.

I am glad the LDN is working so well for you. Taking such a long plane/road trip sounds like fun. The heat in Jamaica probably would do me in. I don't sweat. It is a curse. I used to, but not anymore. Even when I feel the LDN give me a slight flush I can't release the heat. Time should get rid of that flush, it is the new drug in me, to my system.

If I stay awake a bit after taking the LDN, I don't get the flush. Strange. I go to bed at 3 am though. Skip said that was okay, as long as I take it at my bedtime or a little before.

I do wake often, but go right back to sleep in seconds. Mostly because of changing positions or BR breaks. I get 10 hours of sleep at night and don't have to nap. Like a Vampires hours though!

Brenda it is wonderful how much you have benefited from the LDN. I am a newbie to it, so I have to give it a chance. I hope I can praise it like most of you pro's do.

How are you doing Desinie, since you started the LDN?
0357 did you start it?
Anyone else have any comments for the newbie's on here?
Lady

Hi Lady,
I'm doing ok. Nothing much to report. I've been lightheaded a bit today, but don't attribute it to the LDN. Tonight's my 5th night on 1.5 mg. I'm optimistic , but cautiously so. I'll give it a better try this time. I'm on Copaxone too so, I feel somewhat doubly protected I guess lol I'm not sure how long I'll stay on 1.5 mg. I'm thinking maybe a month or so. What dose are you taking, Lady and how long now?

Desinie I started on 1.5 mg on 12-15-08. Ten days later on Christmas Eve..late, so really the 25th, I upped it to 3.0 mg.

I have continued to take the two capsules of 1.5 mg each ever since. Now this is hardly more than a week on the 3.0 mg, so I can't make any claims yet to it's effectiveness. I see some positives, but want to evaluate the lack of holiday stress, and my sometimes annoying kids, on this cheerfulness I feel.

I have many issues (symptoms) that need to be tested for a longer period. I believe that the LDN will be helpful. Something is happening, but I can't put my finger on it right now. I will sum it up when I am more relaxed, some gifts are brought back to the stores, and I am more relaxed.

I will do my own little clinical trial, on just me. I am keeping a mini journal because I know my Neuro and PCP will ask me how I am feeling. If I notice something earth shaking good, I will post it. It is really too soon to tell, IMO. Also I have a few Auto-Immune diseases besides MS. Lucky me.

You are on Copaxone, so take time before you up your dosage. Get used to it first. That's what I would do. But that's just my opinion.
Lady

How long have you been on LDN now, Marion . . . (if you happen to get this message)? You really have had some great improvements, haven't you? I can't recall if your improvements were fairly sudden after starting, or if it took some time before you no longer needed the wheelchair, etc. . .?

Like you said, "we still have MS", and it seems that MonSter will rear its ugly head to remind us if we get too cocky. I'm going on 4 yrs now, and I am still hesitant to give LDN all the credit it is due (in my case).

I agree Desinie . . . you have double protection now. If I didn't have such difficulty with drugs, and almost entirely spinal lesions (this far into the disease process), I think I would be on Copaxone too. Additionally, that is.

Lady, you know your progression rate over the years, and perhaps this is where you might ultimately see the most benefit. I was in a bad way, and going downhill FAST, especially in the last two years before LDN. More then anything I wanted to SLOW the beast!! I got more then I bargained (and paid ) for, but I realize I was very fortunate in that regard.

As far as that "flush" or "rush", does it last about 30 min? I had that, but it stopped after the first several nights of a new dosage. Glad you've found the trick for you is to stay up for a little bit.

Also, did you always wake during the night (morning )? You said you sleep about 10 hrs, but wake often for bathroom, etc. breaks. Is this new?

LDN seems to work somewhat differently for everyone (guess that's true for many drugs), but as long as you are open to adjusting around the initial side-effects, it pays off most times.

Cherie

Lady...thanks for calling me a pro...I just started LDN the week before Thanksgiving. I think that makes me still a newbie like you.

Starting the 4.5mg tonight...I am soooo inspired by Marion's post.

MS was going along nice and slow, having my kids, working and getting steroids, as needed. In the de-Nile River. My Neuro said I might stay RRMS with slow progression. Yeah right! I so believed him.

There were no MRI's in 1977 when they first tested me, or any meds but symptom treatment for my odd tremor, myoclonic jerks and myoclonic seizures, body buzzing had me daffy.

Then BAM! The exacerbations got closer and lasted longer. I was progressing quickly in 1999-2000. One attack overlapped the other. I had 4 a year. Started Avonex for one year, no help then Copaxone for 3 1/2 years. Went down to two attacks a year. I thought that was great.

I did do steroids with the "C" when needed. I have brain lesions, one brainstem and one C-2 lesion. One lesion is only seen on a certain slice positioning of the MRI on the spine, at a lower level.

Then all other meds just stopped helping me. So I gave up all meds. Had to give up my NYC MS Specialist too. I moved. I can understand why this new Neuro is reluctant to prescribe much for me.

I guess we took the same ride Cherie, the fast roller coaster from he!!

The flush/rush is okay, but I like to have it before I lay down. It is a weird feeling, with a new drug. I have always had to get up for BR breaks. I drink a lot of fluids, coffee and water, day and night. I must have a tiny bladder but I have frequency, hesitation, and retention too, if I don't pay attention to my needs. Neurogenic, oh the fun, NOT!
Lady (I find I type and talk too much on LDN.) You have my life story now.

Brenda, I tried to post to you but it wouldn't let me. Gremlins in cyberspace. I hope your increase to the 4.5 dosage goes well with you. I wish you lots of good luck.
Lady

I've tried several times to bump up to 4.5 but just have too much spasticity at that dose. Plus, I can't sleep. So....it looks like 3.0 mg is the optimal dose for me.

I'm pretty much staying the same.....no big changes for me. I love the way the LDN helps my emotional well being. Calm is good! I have to make an appointment with the doc next week for a phone consultation so I can refill my rx. I'm thinking of asking my PCP is he will prescribe it.....that would save me the consultation expense. But if not I will continue to do the phone appointments. Nothing will stop me from staying on LDN....it's a miracle drug for me!

here kitty kitty kitty........ have you checked with crytals list to see if there are any known LDN friendly doctors in your area?i know there are a couple down in florida, or maybe skips could check thier records of who RX's LDN and see if they got one somewhere around you