carolline

ldn as first and only med anyone?

Posted on 03/19/09, 08:47 am

Outside of some bladder issues which have steadily been improving, I have no outwardly visible nor any functional deficits due to my RRMS. My first sign of MS was optic neuritis which came on suddenly but steadily improved over some weeks. I thought the vision issue was just due to my age so blew it off. I then had some mild sensory deficit on my thighs but it too went away and I dismissed it to a pinched nerve. Then, about two years after these episodes, I had a bad relapse that came on slowly but resulted in my not being able to walk without assistance, the loss of my right limb, and a mild deficit of sensory ability on the right half of my body. All this was restored to normal with IV steroids and apart from some ever improving bladder issues, I have no symptoms of MS at all (apart from the MRI evidence and CSF test). I have never taken any of the ms meds whatsoever. I had been following a modified Best Bet Diet strictly for two years but have let up some as of late with no deleterious consequences. I was wondering if there is anyone out there whose sole medication for their RRMS has never been anything but LDN (apart from dietary supplements) and if they started it before they were experiencing serious neurological deficits. I talked to one doctor about it and though he didn't seem opposed to the idea, because I am doing so well he didn't think LDN was necessary at this point. I haven't seen anything regarding the benefits of LDN physiologically (reduction or cessation of lesions for example) but I am still looking into it. It seems there is definite proof that it improves symptoms so I would imagine it would have to be doing something to improve the cause physiologically. Bottom line is, I am wondering if it would be to my advantage health wise to go ahead and start on the LDN despite my current state of wellness regarding the illness. Any thoughts?

• Reply #21 07/11/09  11:56pm
  
  oneblh
  I second that, if I had known of LDN in1994 when Dx, I would have tried, instead, my neuro at that time asked me if I wanted to participate in a study, what the hell, sure, 2 years and 24 MRIs later, I find out I was on the placebo, gone from walking to needing an AFO all the time, Fuck, if I knew then what I know now!!!
• Reply #22 07/12/09  12:01am
  
  oneblh
  guess I should add, now in my 8th week of LDN, 2 wks 4.5 then dropped to 3.0, I am feeling better, not running but just feel better, the thing that pisses me off is that I believe that all of the nueros I have seen must have known about LDN, but not one word of it, LDN as a generic means no money to be made, follow the money...
• Reply #23 07/12/09  1:12am
  
  LarryLDN
  we live in a fantasy world of Life, Monopoly and Chutes & Ladders. What people are raised to believe keeps them there.
• Reply #24 11/04/09  9:50pm
  
  carolline
  Wow, reading all this again is a real eye opener! Living in the Caribbean really makes one lose track of time! I can't believe it was way back in March of this year that I started this quest to get LDN. Now that I am finally on the platform, well, it's a big step considering I am pretty much without any symptoms at this point. It turns out my bladder issues are not from MS and have improved since my original post. I can now sleep for six to seven hours without having to use the bathroom. The fatigue may actually be due to the incredible heat and humidity down here as even the natives have complained about it all year.
  
  So, hmmm, I read about people having leg stiffness from this- I walk fine right now. Will that change or rather could that change after I start this? Wouldn't it be cruelly ironic if I take medication in the hopes it will keep me symptom free only to have it cause symptoms I didn't have? And these "vivid dreams" I hear tell of- I already have vivid horrible dreams-I can't imagine them being worse! But then I read about the regrets of those who wish they had known about LDN years ago before taking the interferons, etc...before their symptoms got worse and I feel like this is my future talking to my present. Like Ebeneezer when Marley warned him not to continue down the path that he had which caused him eternal consequences. I feel like you all are calling out to my present and urging me to take the jump. I guess I need to ask myself, what is the worst that could happen? If I can read all the negatives and be willing to take the chance for all the positives I have read then it really is a no-brainer. I would really like to be completely rid of this disease and I think stem cell therapy may, in the future be the cure, but until then, I need to keep as healthy and able as I can. I feel like LDN will help me do this. Thanks for all of your input and I will keep you posted. I have urged my doctor to take a baseline MRI before I begin LDN for her sake not mine and in the interest of science. I am curious (it has probably already been discussed elsewhere) if anyone has had any accompaniment of reduced or disappearance of lesions during the time of the LDN therapy.
• Reply #25 11/04/09  10:44pm
  
  LarryLDN
  Keep a journal and you can see for yourself the changes, advances and issues. I hope nothing but good reports.
  
  All I Know is, my worst days on LDN have/were/are been consistently better than my best days prior to it. Haven't had a lasting cold since starting it in 2003, and the 2 times my body tried to get me sick it lasted a few days and I could observe the healing going on. Plus a killer staph in 10/04 that could have killed me has surely got my podiatrist still amazed to this day.
• Reply #26 11/04/09  11:02pm
  
  carolline
  That is awesome!
  
• Reply #27 11/06/09  12:02pm
  
  MSKC
  Since my MS has gone from RR to progressive, I have chosen to just take LDN. I took Copaxone for over 4 years and got really tired of "shooting up" every night, having pain and knots all over my body and I had a severe total body spasm one time and had to be taken to the hospital(it happened right after I took the shot). Anyway, I have read so much about LDN, and until they can come out with a pill that is proven to help MS, other than LDN, I am just going to take that, Baclofen and Valium or Zanaflex(when needed). I just got tested for my vit. D level, which was really low, so I was also told to take 2000mg per day. I also take a multivit. too and just started taking an asprin each day because of the research on "sticky blood" and it helps with inflammation. I usually chew up just 4 baby asprin per day, but a couple of days, when I really hurt, I chewed up 4 more later in the day. So, that is what I am doing and gonna stick with it, until I get other suggestion from this community or my neuro.

LDN .. Low Dose Naltrexone 3.0 MG or 4.5 MG ...... Helps ALL AutoImmune diseases not just MS