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Old 11-08-2012, 02:55 PM #781
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Yes, I still order from him. I feel better on it too.
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Old 11-08-2012, 10:18 PM #782
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Still taking LDN and don't plan to discontinue it; especially after the epic fail when I did because I just had to know if it was really working. Yeah I know...IDIOT .

Almost made an appointment to see my PCP today but after thinking about it some, couldn't see much point. I can whine here if and when the need arises and that's about all I can do there. Most of the meds that I've tried either have side effects that aren't worth the risk or don't work well enough to relieve the sorts of symptoms that I'm having. So other than looking at me like I have three heads , he doesn't offer much else.

Nasty headaches and arm/hand numbness are continuing and as I said in another thread, sleep is a passé concept lately. I don't feel unwell other than the headache thing, but that on top of lack of sleep and the usual spasms in the legs have taken a toll on my energy level over the past week or so.

The good news is that cognition is intact (at least I think so ), as are a good attitude and a sense of humour .
I attribute those in part to the LDN because in the past these things were issues of greatest concern when symptoms were hot.

I double dosed on the LDN by mistake one night but had no ill effects. Evenso, I now have a better system to keep track of it.

Long story short; will have another full neuro workup in December with MRI of head and spine; then will see the neuro in January. If the headache and arm numbness don't ease off by next week I'll see what the PCP has to say about it; as I would like to get back to work.

Haven't been posting much because it takes a long time to type even with spellcheck; but am reading posts and wish everyone well .

With love, Erika
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Old 12-29-2012, 10:18 AM #783
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I missed taking LDN for just one dose on Friday (slept through my usual time to take it after a rather late night). By late morning yesterday by body felt like it had been in a bad fight; achy and muscle pain/stiffness more than usual.
Took the LDN dose last night at the usual time but woke up this morning with back spasms and with all over body aches continuing.

Had a similar reaction after skipping a couple of doses in the past...but am surprised that this could happen after missing just one dose.

Has any one else noticed such a set back after missing one dose? I'm wondering if maybe I'm coming down with something as well/instead.

Thanks.

With love, Erika
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Old 12-29-2012, 10:41 AM #784
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Sounds like you may be coming down with something, but I hope not.
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Old 07-28-2013, 11:56 AM #785
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I am off LDN for a few days. I had a tooth pulled, and the start of a tooth implant installed last week. I am going to be relying on Codeine to keep me comfortable for a while.

The actual dental procedure wasn’t all that bad, but that tooth was really stuck in there good. Where the tooth used to be is now quite painful, but the headache I have is much worse. I guess it is from all that tugging and pulling that was done.

I had been worrying that the procedure might trigger an MS flair, but I think the danger of that is gone by now. I expect I’ll be back on the LDN by midweek next week. Until then I’ll just take it easy and go with the flow.
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Old 08-08-2013, 08:14 AM #786
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I'm going back on LDN. I have a phone consult scheduled with Dr. S in September.

Everything else I've researched and read about is way too scary. I have enough to deal with with MS.....don't need a multitude of medication side effects to try and decipher.

My Neuro is really pushing Tecfidera. He won't be happy with me but he's going to have to test this new med on someone else.
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Old 08-08-2013, 10:33 AM #787
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I hope LDN keeps you as happy as is does for me, Kell.
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Old 08-08-2013, 11:35 PM #788
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My symptoms always get worse if I go off LDN; even for a few days.
When I was in hospital for digestive stuff recently, the docs said that I'd have to go off of it, which I did for 3 days. The night spasms got worse as did tremors, headache, fatigue and numbness. So after the surgery, without telling them, I started taking it again and began to feel better within a couple of days.

I'm with you on the not wanting to take a bunch of medication, especially experimental ones. Baclofen, Ibuprofen and LDN are pretty much it for me.
Hope that the LDN takes the edge off for you too .

With love, Erika
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Old 09-18-2013, 05:46 PM #789
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Okay, can you take LDN with a DMD or is it used in place of one?? I just seam to keep going down hill with my walking and balance. I'm on Tec.(into 2nd month with no side effects), but still having lots of problems with walking and balance. I'll be in a wheelchair if I keep going this way. I already took my scooter to school this year just to get around.

Just wonder if I need to talk to my DR. about this. Any thoughts??
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Old 09-18-2013, 10:32 PM #790
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Gee, that's a good question. If your doc is familiar with the mechanism of LDN, it would be worth asking about taking the two at the same time.
You might also check with one of the following LDN info websites:

The Low Dose Naltrexone Homepage
http://www.lowdosenaltrexone.org/

LDN Research Trust : LDN Research Trust
http://www.ldnresearchtrust.org/

With love, Erika
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