Guest guest Posted October 23, 2010 Report Share Posted October 23, 2010 Hi Sue I have had SPMS for 15 years & RRMS since 15 years old and have seen the following improvements over the last 7 months since taking LDN: 1 Flexibility of leg, first improvement which started after 2 weeks on LDN, (the other improvements followed gradually) at first only in the middle of the night (after taking LDN after 9pm) now all day as well – can kneel for the first time in 15 years 2 Improved strength and balance of left leg, can stand balanced on both legs for the first time in many years (not very well). Combination of improved flexibility, strength & balance has lead to improvement in mobility 3 Regained 80-90% of smell and taste which I lost nearly completely for 3 years 4 Improved co-ordination of left hand. When I first regained it a few months after I started taking LDN I could type perfectly. Then I lost it due to allergic reaction to LDN & now I have the improved co- ordination but weakness of hand negatively impacts on the co-ordination. Little & ring finger the weakest. 5 Have totally regained normal speaking - I had been gradually losing both the strength/projection of my voice for the last 2 years. Raising my voice and even talking was often an effort – now I am told not to talk so loud! 6 Choking – much, much improved none in last few months 7 Pins & needles and flares of pain like being jabbed with a needle – none in last five months 8 No colds/flu & no bouts of sinus (which used to be a constant problem & lead to exacerbation of MS – LDN boosts immune system) 9 Bladder improved 10 Feel really good/cheerful (LDN releases endorphins) BUT I had to stop LDN because of increasing severe spasms & intense pain all day & night. I have a baclofen pump that usually controls the pain & spasms but after having numerous tests a dye pumpogram showed that all the baclofen was leaking into the gut through a hole & not going down the spine. I had to go into hospital for a new catheter. Finally have no spasms/pain but becuse I had been off LDN for more than 2 months I had started LOSING the benefits. The following happened – flexibility & mobility much less, post nasal drip returned, some choking, loss of smell, pain flares in toesL Then I restarted LDN taking 2.00 mg of LDN transdermally but spasms started from 3am (painless but intense) & the spasticity when I got up in the morning was so bad I could hardly walk, couldn’t sit & this lasted until 10 am. So I started trying varying the dose every way I could think of but spasms & the spasticity still persisted at intolerable levels. FINALLY SUCCESS - I currently take 4.5mg once a week. Spasms and spasticity are reduced 80% (both intensity & frequency). The night I take LDN they are often worse. BEST OF ALL my sense of smell started coming back immediately – smelt coffee and the stuff the floor was cleaned with – so wonderful when you regain things you had lost. I would strongly recommend he takes it transdermally - meant to minimize side effects because it by passes the liver on the first round – transdermal has other benefits too : 1 immediate absorption 2 do not need to take it with food 3 easier to adjust the dose up or down as you need LDN has been magical for me, just persist & be patient & your husband will see it too BUT if he has MS with bad spasticity/pain LDN can exacerbate these, as happened to me. Pain & spasticity were my primary & most consistent symptoms since my first attack at 15 years old. What does your husband take for the spasms – Dr Bob Lawrence is very against baclofen (I was never offered anything else & now I have pump…) & says he personally has success with gabapentian. You can contact him by email & he replied to me really quickly. All the best Trish From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of dejavudo_99 Sent: Thursday, 21 October 2010 10:59 AM low dose naltrexone Subject: [low dose naltrexone] new to ldn...advice needed Hi all, My husband has SPMS, diagnosed 2001. He's been on ldn for just over 2 weeks now. He's taking 1.5mg nightly in capsule form. He's has no vivid dreams or restless nights but has had his MS symptoms ramp up considerably..ie...pain, spasms and fatigue. I've read many of the posts on here and as much as I can find online and I see where this is happening, but usually only lasting 7-10 days until the body adjusts. My question is, has anyone had a similar experience and if so about how long should he expect to feel so crappy? I know everyone reacts differently, but some guidance would be much appreciated!! Thanks, Sue Quote Link to comment Share on other sites More sharing options...
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