LDN, lets deviate now. 19 months ago my life crashed… Today for the first time during these past 19 months, i have just seen a glimpse, a fleeting flicker of light or hope at the end of whats been for me a long n dark tunnel. My disseminated cerebellum or the demyelination of it, distorts my emotional perceptions apparently - this i understand although i constantly and continuously monitor my behavior carefully, however my emotions tend to get the better of me sometimes : )))) Over the past 19 months i have lost just about everything i ever cared for, this drug has given me hope. Hope should never be underestimated, hope is a powerful element to our experience or existence or stream of consciousness, call it what you will, just think about that for a few moments. What price would you give to have this gift enter your mind right now as your reading my words… .
LDN lets deviate now, i think 1.5Mg 2 start - took my first dose 1.5mg on Friday 31/08 at around 12:30pm. 16:50pm managed to drive to the chip shop to get my dinner, upon reflection not such a wise idea. My balance and vision got a little worse after i took my initial dose. For this past week ive only slept four or five nights, this is a regular pattern for me now and has been for months. Went to bed at around 8:30pm, after some time eventually feel asleep, woke up at around 4:30am, no weird dreams as id anticipated. This morning my balance and vision are not as bad as they were yesterday. Something has changed for me this morning but its difficult to put my finger on just what has changed. Mental clarity seams improved slightly, i feel happy for some reason. Not sure why i feel this way. So i think i will update this post from time to time just to read up on my own progress. Sounds silly right?..hahahahahahaha Well it seams a relevant place to document my “Lets Deviate Now” decision or LDN. Why call it lets deviate now? simply down to my personal experience over the last 19 months, all the doctors, two neurologists, various pills / medication and finally the good old NHS : ((((((((((
It’s strange that your post is the first post I read this morning as I too took my first dose of LDN yesterday, albeit a few hours after you, 9pm, same dose, slept like a log, no vivid dreams for me either,( I was kind of looking forward to the possibility ) first time in along time I was able to sleep past 6am, I was " woken " at 8 but feel like I could have happily slept for alot longer !
Just wanted to wish you all the best and hope the happy feeling stays with you for along time and please keep updating your post as I shall be interested to read how you are getting on Ness x
There is a simple explanation for feeling happier: LDN stimulates endorphins - the brain’s “happy” chemicals. I hope you get more tangible benefits from it too eventually, but please keep your expectations realistic. It does not stop relapses and does not work for everyone, even for symptomatic relief. For those who are interested, you can get info on LDN from the ldnresearchtrust website. It is safe to take with DMDs. It is the only drug available in the UK at the moment that may help progressive forms of MS, but it does not work for everyone and has not been properly trialled. There are a few very small trials, but these did little to show anything other than it is safe. For what it’s worth, if I were SPMS or PPMS, I would certainly try it. Karen x
Greetings ness and rizzo. Oh before my quick update : )))) As the newly elected president of the cerebellar appreciation society a special warm greeting to you rizzo!..hahaha No really i appreciate your comments actually.
02/9 So i decided to up my dose to 2mg but now wish i hadn’t bothered. I’m going to play this by the book as it were, 1mg for two weeks then increase slowly by .5mg depending on my reaction to the ldn. Felt well spaced out for most of the morning more than i normally do, almost felt like i was due a headache, my balance and coordination were terrible today, possibly due to stepping the dose up to 2ml. The noise in my head stopped for 30Min’s or there abouts @ around 10pm. Didn’t eat much food today, four peaces of toast. This loss of appetite has become a little more of a regular thing lately. I did take my vitamins as Dr Lawrence suggested, vit c @ 1000mg x1, evening primrose oil @ 500mg x2, omega 3 fish oil @ 1000mg x2 oh and i had a banana. Sister came around today to see how i was getting on, she told me i looked ok and my walk looked normal but she was just being nice i think Had some disturbing news from j, not ms related or my health problems, i should call him to make sure hes ok, better still phone for a taxi and look him in the eye while asking the question. Not sure im up for all that stuff at the moment but… In bed by 10:30pm but couldn’t sleep.
Same old problem i think. Occasionally the noise in my head changes tone while I’m sitting here watching tv @ 4:18am again the noise has been constantly with me for 7 or 8 months now. Sounds like static from an old analogue detuned radio, the pitch has risen slightly but the volume has decreased. Just went outside for a fag and noticed my walk and balance has improved slightly during the night. 1mg works much better for me. I feel happy at the moment so im guessing those happy endorphins are swimming around somewhere inside me having a party or something eh? : ))))Ok its 05:11 so im going to my bed again, hopefully i can get some sleep. Woke up @ 12, feeling good, eyes still a little rough. Suns lovely this morning. Had a shower n shave @ 1pm. @2:30 felt sick just the feeling didn’t actually throw up, not sure why haven’t eaten anything yet today. Started thinking a little more about lee today, hes the second guy to jump in the space of 6 weeks or so, its always the person you least expect i guess. I can see the bridge from my bathroom window as its only 1000 meters from my front door. Lee, its the people you leave behind that suffer. I loved you like a brother but your one selfish b#][d! for doing that. 15:40 need some more fags : ))))just hope Dr Lawrence isn’t reading this, all them free radicals hurting me. Thought about practicing a little Meditation today, i think a little distance from all this ms stuff would be a good idea, ive already deleted most of my ms related sites. I spread the net far and wide in my on-line search for answers or help, American Canadian Russian and many European sites, thank god for the auto translation software eh : )))) I think its time for me to focus on something else for a while now. A little Meditation should be effective for this. Oh rizzo is quite right about the ldn trust. Im not here to encourage anyone to try it but i have noticed during my search some guy or company charging excessive amounts of money for it, i think £130 per month and no prescription necessary! I pay £15 for my three month prescription, e-med cost £20 to join and the ldn its self cost £17:50 for one months supply. Stop the press!!! im feeling hungry at last! : )))) Im off up the chip shop quick : )))) Had me row and chips even a saveloy then had a fag and needed a lie down for 20 mins or so, felt sick again. Interestingly seamed to coincide with the cigarette again, not sure. Spent most of the evening lay down feeling rubbish and thinking of giving ldn a miss tonight. Changed my mind @ 12:30am then had 1mg just to give it a chance. didnt have my vitamins today. 04/09 up @ 8:00am Spent most of the day walking around the house like a zombie. Is this what its like having ms. I think they made a mistake in the diagnosis, the original neurologist was a Muppet, the specialist he referred me to is a ms specialist i last saw her on the 1/08 think that was a month ago now. she told me most of my problems were down to stress. I asked her to refer me to someone else with no association to her or the previous guy, he divides his time between the alex in redditch and the university hospital in Coventry. in my opinion shes just as useless. When i mentioned to her id met a guy through face-book who was going to help my get some ldn, her response was a chuckle, and looked to her minions for their agreement? This hospital in Coventry is where lost of other trainee doctors get on the job training, i remember when she diagnosed me way back on the 25/01/2012, again there were three or four other people in the room and she looked over to me and said “yeah it is ms” then continued talking to some other guy about my mri images. All i ever wanted from late January 2011 was some help. She finds my quiet, reserved desperate efforts for help on line funny? simple amusement? I wish i could understand her rationality behind her chuckle. Its fair to say im not my old self at the moment i described the way i felt as a shadow of my former self. I have not eaten any food again today its 15:40 now as i write this. Noise in my head remains unchanged this afternoon, my balance, my eyes are not so good. Took 1mg tonight and decided to get one of those donty cheese burgers from the 24hr garage, they sure don’t taste to good but some foods better than no food right? not sure the cow would agree with me on that one : )))) Seams them endorphins are swimming around again tonight,oh i mean this morning its 01:21 now. 8:00 woke up feeling good today. My cognitive functions appear better this morning as does my brain fog, the noise in my head is about the same my walk seams better today as does my coordination. The sun is nice n bright this morning, warmth normally has the inevitable devastating effect on me lately, still the same on ldn but hey its early days, Im mind full on what rizzo said, about realistic expectations, she always give good advice, and hey shes got a cute cerebellum after all : )))) No really its one of the cutest ive ever seen, that said come to think of its its the only one ive ever seen : )))) apart from my own that is, mine still looks kinda weird. Im having problems with food at the moment, its not down to the ldn its just a weird habit iv picked up recently, not sure why. I have noticed over the last 2 days or so ive been feeling a little moody, its not in my nature to be this way but thinking about it, the last 19 months takes its toll at some point i guess, its not a problem for me at the moment, just an observation. Lee i still hate you for what you did but for what its worth mate may you rest in peace buddy. 06/9 @ 01:17, took another 1mg and no food for me today, feeling a little spaced out but been thinkin about j too much i guess, maybe its time to post this…lol Hope it fits on and its not 2 long to read.
Ok perhaps a smaller update is more appropriate : )))) Some times i think im loosing my mind. 07/09 1mg this evening @ 23:37 no food for me today. My vision has deteriorated slightly, first noticed this yesterday evening.
Hi Adrian, yeah i have someone here for me but i try to keep this to myself I dont want to cause people to worry really. Css? im not sure what that means But thanks for taking the time to write your comments and read my ermmm, episode. Tonight @ 9:30 ish took 1mg and had some food tonight at last
It sounds absolutely awful. Css are Cascading style sheets. As an aside, you have a great writing style, very Iain banks, which I’m sure is absolutely no help to you at all. Are you feeling any better? I kinda went through a similar experience at the beginning of the year. I would go on the tube an get really confused. I had about 15 different symptoms. It was very frightening. It went on for over 6 weeks. Fortunately it started to get better after I started taking B12.
Well to be honest Adrian its been kinda like a nightmare. especially while i was using the avonex, i only chose that because its one injection a week. Thanks for ya compliment on my writing skills, that’s a new one on me : )))) I have dyslexia so its always a challenge for sure even when my eyes were normal. Adrian i was just wondering now your taking B12? where your symptoms related to your vision? i have problems with confusion too, maybe b12s worth a try for me?
Hi Mikey, I would definitely give B12 (100mcg) a go. As I said I had an horrific episode at the beginning of the year. I thought it might be B12 deficiency, so I started taking B12. My symptoms went after a week and I felt fantastic for two weeks. Unfortunately I got a reaction to the B12. I take B12 now but I take in moderation as it gives me tinnitus. Everything that seems to make me feel better gives me tinnitus. Very annoying. I had Optic Neuritis, so yes it did affect my vision.
Anyway, hope this helps and I hope you get to enjoy the sunshine.
Thanks for the info adrian sounds worth a try to me
Ok took another 1mg tonight, feeling better all day today. Had my dinner, the noise in my head is still with me but another reduction in the tone. Feeling sleepy so im going to try sleeping Walks about the same today
Took 1mg this morning, decided to take the ldn in the mornings now. Had no sleep again and my vison / walk isnt to good at the moment. Im going to give this ldn another week, then decide if its for me or not. met an old work mate around 5am down at the 24hr garage, he said theres a job waiting for me if im up for it. I really want to work with those guys again… when all this ms stuff kicked off they didnt treat me any different : )))) that was so cool of them : )))) wow that was october last year i had to leave my job… the days, weeks, months just fly by for me these days
Mikey - have you spoken to whammel about all this? He’s the most knowledgeable person I know about LDN and might be able to advise? You could send him a pm?
Hi rizzo, thanks for the tip sounds a good plan to me. I could do with some advice on this ldn. You wouldnt delieve how loud this noise in my head is tonight/this morning. I havent slept since monday either. My walk and ballance are much better tonight thou but my vision is terrible. Still its worth trying this ldn for a few weeks i think, wow its day 12 already!! Well thanks again karen, im going to try get some sleep i think
6:00am 1mg
Year right : )))) still no sleep and the noise in my head is still fairly loud, the pains come and go in my legs this morning as for my eyes im keeping the right eye closed because ive got double vision today. So tell me why do i have a smile upon my face… well could be them there pesky endorphin’s again or is it the case that something has changed for me this morning, the smile on my face is from ear to ear honestly.
: )))) ok its my balance its actually much better this morning, not as good as i remember it to be before all this happened to me but its a positive, auspicious, great big fat hairy bundle of joy and i love feeling this way!!! Ive just thought of a great idea, not sure what time it opens but theres a great cafe just down the road from mine and for once im actually starvin : ))))
13/09 1 mg and not feeling so good today Been itchy mostly, im sure ive managed to scratch most of the skin off my chest during a very uncomfortable night? eyes are still quite bad and my sense of balance has changed, or the disorientation i feel but my walk is an improvement kinda weird i guess. Possibly 1mg suites me best… still to early to say i think, not sure why but hey as i told dr Lawrence im not expecting miracles with this ldn stuff. Hes quite a character, he spend two hours of his time talking to me on the phone about five weeks ago. Hes been on ldn now since the turn of the new millennium, himself diagnosed with chronic progressive ms back in 1973 and says his ms has remained stable now for 12 years.
14/09 stepped up my dose to 1.5 mg had a breakfast bap, thats a good old fry up with extra black pudding : ))))
Took my 1000mg vitamin c and feeling great this morning. Decided to give the fish oils a miss, just out of curiosity really, im not sure if all these vitamin supplements are necessary.
Today im feeling positive and positivity for me has been in short supply lately. I told my neurologist i felt like a shadow of my former self, that was on the 1/08… today i feel like im welcoming myself back an old friend. i have tears in my eyes while i write this, the impact this ldn has had on me has been absolutely amazing. A difficult path for me to walk but im so glad i found this drug. My neurologist, an ms specialist just chuckled when i first mentioned my persecute of this illusory drug but thats cool i mean it doesn’t work its magic for every one apparently… hey reading through my comments here its been a strange experience for me thats for sure. But if your reading my words now please excuse my tears and excuse me when i say… HEY MIKEY WELCOME HOME BUDDY!!! NOW STOP CRYING LIKE A GIRL AND PULL YASELF TOGETHER MAN!!! hahahahahaha ya know im thinking next week of going to stop by and say hello to the guys, at the place where i used to work… i just hope i dont start crying in front of em all…lol No really it would be great to see em all again, it was a dirty smelly physically demanding job (HGV braking systems) but i loved it, i mean there wasnt a day where i woke up in the morning and thought … oh no not again, time to goto work now : )))) For me thats always been half the battle…lol
Ok, reading over this record of my LDN experiment its not working out for me, actually ive never felt so bad. not sure why this is but im not having any more
Had some disturbing news from j, not ms related or my health problems, i should call him to make sure hes ok, better still phone for a taxi and look him in the eye while asking the question. Not sure im up for all that stuff at the moment but… In bed by 10:30pm but couldn’t sleep.