Re: MS/LDN/Spasms

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Hi Johanna, I have had SPMS for 15 year & I have written most of this before on the LDN site . Because I had SPMS when diagnosed I was never prescribed any drugs as the doctors believe you to be beyond help & hope. Nonetheless I have seen many improvements since I started LDN a bit more than a year ago (see history). I feared I would have to stop LDN because of increasing severe spasms & spasticity. I have a baclofen pump which usually controls all pain & spasms but after 7 happy months on LDN (with improvements in 12 symptoms) 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 at all & 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. Then my GP told me of an Aboriginal remedy she was told by one of her clients who said it had really helped spasms her and spasticity. It sounds really weird but it has improved my spasms and spasticity hugely. (My spasms & spasticity have always been worse at night). I tape a slice of cork (I use a wine bottle cork) every night over my belly button (I find the clear leuco tape the best for this) and the benefits have been truly remarkable. It was cumulative - first night the cork decreased spasms/spasticity by 30% now spasms/spasticity are improved by as much as 98%. I know it seems really, really odd but it was the ONLY thing that stopped the spasms & spasticity that seemed to be caused by LDN. So you could try the cork for a week and see if it helps your spasms, it costs nothing. Definitely I believe you should expect to see gradual and steady improvement (I have) though Art always says that only 2/3 of people with MS see improvement in symptoms the most NB thing is that LDN STOPS ALL DETERIORATION. NOTHING ELSE DOES THIS I absolutely believe in expecting the best. I read that most people (with MS) do best taking it slow. Also if you have spasms or spasticity do not take more than 3.00 mg, build up to that gradually and take it transdermally. I have typed up my history so you can see that although things have not been easy for me I have persevered. LDN has been truly miraculous for me (in spite of the interruptions due to allergic reactions) History My constant/worst symptoms have always been pain & spasticity down the left side & including my spine. The first attack was at 15 years old. I now have a baclofen pump which has completely taken away all the intensely painful spasms/skin pain & helps a lot with spasticity. But it does negatively affect my balance. Also lots of allergies to synthetics/chemicals/supplements/drugs/ homeopathy/ acupuncture/food which have made any sort of treatment difficult. Finally found what works best for me is kinesiology/NAET therapy which enabled me to take baclofen in the pump and LDN (though I keep having to stop if I get allergic to it) & a few supplements. After 7 months on LDN I have had numerous gradual improvements in different areas: 1 Flexibility of leg, first improvement which started after 2 weeks on LDN (3.00mg), the other improvements followed gradually, at first only in the middle of the night (after taking LDN after 9pm) now all day as well – I can kneel for the first time in 15 years2 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 mobility3 Regained 80% of smell and taste which I lost nearly completely for the last 3 years4 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 were the weakest now they are stronger but index and middle are more stiff.5 I 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 months7 No Pins & needles 8 No colds/flu & no bouts of sinus (which used to be a constant problem & lead to exacerbation of MS – LDN definitely boosts immune system)9 No flares of pain like being jabbed with a needle – none in last five months10 Feel really good/cheerful BUT I had to stop LDN because of increasing severe spasms & intense pain all day & night. The baclofen pump 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. (This caused new weakness in left hand/arm which I have taken nearly 4 months to clear) I had to go into hospital for a new catheter. Finally have no spasms/pain but because I had been off LDN for more than 3 months I had started LOSING the benefits. The following happened – flexibility & mobility much less, post nasal drip returned, some choking, lost most of sense of smell & taste, pain flares in toes came back. I was taking 4.5mg transdermally every night. 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. But smell & taste is not yet as good as they were after 7 months on LDN. Smell & taste, all come and go, sometimes really good and other times really poor. Then I started having allergic reactions to LDN again & had to stop and gradually build up from once a week. Am now taking 3.00ml transdermally every second day. Also 5 new benefits in 2011 – 1 Bladder has improved enough for me to be able to stop taking medication/herbs. Though it is still not great especially if I drink coffee or tea. 2 Also there is a more normal movement when I walk. I am able to throw a ball for my dog hard and straight again as opposed to wondering where and how it might land. These improvements even though I am only taking 3mg every 3 days at the moment because of allergic reaction to drugs which affected my tolerance of LDN3 Dexterity of hand allows me to type although little finger is still a bit weak & gets tired. In the past neither the left little finger or ring finger had the strength.4 Strength in left hand now enables me to cut with a knife a fork. For the last few years I was mainly using my right hand as fingers of left were too weak.5 Bladder capacity has increased. I am really happy to see any improvements and expect and do, see more all the time. Keep positive. Take LDN. If you do I am sure you will be able to lead totally new life. Good luck. Trish