It might be time for LDN

[JAM622]

I have been lurking here for the last couple of years since finding I could only walk a block or so when I was on vacation. A few years before that I had been given a clinical diagnosis of MS due to my symptoms - loss of balance and coordination, fatigue, bouts of vertigo, a case of Double vision. After an MRI the diagnosis was rescinded and I thought maybe it was just because I was getting older (I was 53 at the time). After that vacation where I had trouble walking, the MRI showed no changes and I was termed "possible MS" but I decided to assume I had it and started to fight it. I went on a no saturated fat diet and started to take supplements recommended to me by a homeopath that has MS. In the last two years I have not had any flares but found my walking to be getting slower and my thinking slowing down to where I could talk faster than I could think.

Finally last week I visited my neuro after a new MRI. The report showed a new or deeper lesion. I brought up LDN (having learned about it here) but he said it wasn't tested but did suggest that I go on one of the crabs since he could see my walking was getting worse.

While I had adjusted to having MS (much easier for me than most given the very slow progression I was experiencing and the fact I could still walk and had no pain), I was surprised how I felt after the appoint. I think it was that disease progression could be seen in black and white that jarred me a bit.

That brings me to my question (finally! I am never accused of rushing to the point). I have an appointment this week with an MD who is LDN friendly. I think he will give me a perscription so I would like to know what I should expect to happen when I take it. Since many of you take LDN, what type of side effects did you experience? What were the effects on MS you experienced? I am also looking to explore AP-4(? not sure of the name,but it has been mentioned here) since it seems to be geared to help balance and walking).

Thanks for sharing so much on this forum, I have found it to be both informative and comforting.

Jim

[cricket52]

Hi Jim and welcome!

I too was given a 'possible MS' dx at age 52 with clinical signs but no lesions.

Given a lesion and a choice, LDN would be it. No CRABS at my age.

Good luck with the LDN, it will be interesting to hear how it is working for you.

[pals1107]

I'm probable MS, lesions, progression, high MBP but no "O" bands, that is all that stands in the way of a DX. I have been on LDN for almost two years.

I noticed a big difference the first day, I was washing windows at 5:30 AM. I've had no big attacks, or no new lesions (at least not on the brain or C spine, that is all that has been rechecked). Bladder issues improved, dizziness left, cognitive issues improved, and fatigue some better. And it has helped my IBS and psoriasis.

What ever my problem be it MS or something else, it has been a BIG improvement. With no side effects, you can't say that about most drugs.
You've done some reading, I'd say you have nothing to loose.
Pat

[Mariel]

Jim, I really want to try it. I am in an area where medicine is not progressive, but I may try to get my pcp to let me try it. I too was dx'd after 50, following three decades of on and off symptoms which worsened enough to get me an MRi and VER. I have never taken the CRABS because I have another ailment, porphyria, which means those might be hard for me to handle, very hard, although no one knows.

I too have been on the low saturated fat diet for l8 years, since diagnosis, and I KNOW it helps me because I know what happens if I get off it a few days. I react quickly to saturated fat--don't have to wait around to see what is going to come down. I can get away with maybe one meal with saturated fat, that's it.

I want my LDN! I want it to help me with depression, as I can't take any anti-depressants. I have heard its an immune modulator rather than an immune inhancer or depressor. I must start a thread to ask how my pcp gets it.

Mariel

[lady_express_44]

I'm going to dig back through my postings to find where I've previously answered these questions, so I'll post my answer in sections.

This is how it has helped:

I have had MS for almost 16 yrs, and have been on LDN for 17 months. I too have done very well with it. :)

I had a very bad Transverse Myelitis attack in 2003, that left me with considerable & consistent damage for the next two years. I also had a series of back-to-back attacks, occurring approx 3 months apart.

When I started on LDN, my symptoms included:

- bowel & bladder problems
- numb hands
- significant cognitive difficulties/brain fog
- a claw hand
- a LOT of PAIN; spasticity, spasms
- intermittent "spinal headaches"
- unrelenting fatigue
- etc

Most of my symptoms let up almost completely (and immediately), my EDSS dropped one point in 9 months, and I have had no further attacks. I have had several occasions where I have been without LDN for a few days (or it had expired), and my symptoms come back within a few days.

I started at 3.0 mg (liquid) and slowly moved up .5 mg every few weeks (after the first month). I did have to go back down for a few weeks at one point, when the cold weather first hit. (Many people start at 1.5 mg, then work their way up from there).


http://brain.hastypastry.net/forums/showthread.php?t=2590&highlight=low+dose+naltrexone

Cherie

[lady_express_44]

I can't seem to find the link with the side-effects I had initially, but it might be in one of the links posted on this thread (which is good to read anyway):

http://brain.hastypastry.net/forums/showthread.php?t=14929&highlight=low+dose+naltrexone

I started on 3.0 mg, use liquid (which goes straight into the blood stream), and am extremely sensitive to any medication. Most people seem to be starting out at 1.5mg, and use a (slower release) pill form of the drug, so my side-effects might be a little different then others.

Going on memory, the side-effects I had included:

- didn't sleep very much the first night (but still felt good the next day)
- had a "rush" feeling for about 30 min (the first two nights)
- nausea every day for a week. This was rectified by drinking 8 oz of water immediately after taking LDN (which is recommended, but I had ignored that instruction :rolleyes:)
- slight headache for a few days

I've heard of others who have very vivid dreams, and people who's symptoms seem to "awaken" the first week or two; numbness, tingling, stiffness. This is an expected side-effect for some people, and apparently nothing to be alarmed about!!

Can't think of anything else at the moment, except that I would recommend you buy it from Skip's Pharmacy in Florida because he has the most experience with compounding.

Cherie

[lady_express_44]

Oh . . . and LDN can be combined with Copaxone, if you want "double" protection. ;)

Cherie

[NanMacan]

What Cherie said.

I had a little more stiffness, some very odd dreams, and strange awakening/flushing of feeling in my legs. It didn't fix anything for me physically, but it did make things much better physically.

It did a lot for my bladder, bowels, sleep, energy and mood.
I'm very happy I did it.

Nan

[JAM622]

Thanks for all of the responses. I see the doctor tomorrow. I'll let you know how it goes (and be sure to drink a lot of water with it).

Jim

[Abby2006]

Jim http://img206.**********.us/img206/314/welcome2yg1.gif to the board


Abbyhttp://img388.**********.us/img388/6650/ebible3sz3.gif