oneblh

LDN Day 12 & sleep de loo

Posted on 05/28/09, 11:52 am

I have been noticing my sleep pattern seems to go through a cycle of: wake up...drift off..wake up..drift off until of course until I just GET UP! not a problem really, just curious.
And I wonder, I was Dx with MS 1n 1994, only recently and on this site did I hear of LDN. My neuro knew about it but never said a thing! I wonder why??

• Reply #1 06/23/09  1:55pm
  
  MSKC
  We have never heard of it because it is a cheap drug that works!! When I first started Copaxone in 2005, it cost my insurance company about $1200 per month. The cost first jumped the month I went on Medicare--from $1200 to $3700, even though Medicare doesn't cover it, my private insurance does. Now it is about $5000! Why???? Since Copaxone only stops relapses about 30% and I was progressing slowing on it anyway, I am thinking about completly stopping it all together.
• Reply #2 06/28/09  8:02am
  
  oneblh
  that is why I am being so stubborn about the CRAB drugs, no guarantee, might work, might not, "studies show" .. who did the studies?...expensive as hell, feel worse for a short time after injection, I already feel worse, they are supposed to help my MS but they cant get rid of the "flu like" symptonms????? LDN is "so far so good"
  week 5
• Reply #3 06/29/09  7:28pm
  
  MSKC
  What about disability income and not using a standard MS drug...when re-evaluated, could that be a factor in being turned down after having been on a CRAB drug????? I had no problem getting SSDI and need to keep it. I am just tired of lumps, bumps and pain from having to "shoot up" Copaxone ever single night. I became rebelous last week and stopped taking it. I need a new refill and am going to talk it over tomorrow with my new doctor and then decide what to do.
• Reply #4 06/29/09  7:37pm
  
  LarryLDN
  if you feel it's a problem, keep the script. I'm only on LDN and in the middle of SSD paperwork. I'm stable on LDN, my neuro prescribed it, he's the one filling out all the paperwork... well, him and my chiros.
• Reply #5 06/29/09  7:53pm
  
  oneblh
  thats a valid question MSKC, hadnt thought of that, boy wouldnt that suck, can barely make ends meat now, keeping the foreclosure demons at bay and because you are not taking something (CRAB meds) that absolutly makes a person feel worse even though it MAY or MAY NOT help them they could lose their disability income, that would be classic. Good question for the group tonight, lets hope someone shows up!!!
  remember 6:00 PST at http://www.beetlemed.com/#/chat/join/?r=161
  
• Reply #6 06/30/09  9:41am
  
  MSKC
  oneblh, how did the chat go last night? Did you guys discuss my disability issue? I forgot to tune in....too much family stuff going on like TV!!!! LOL
  I go to the neuro this morning for my first LDN follow up. I woke up with an aweful leg cramp. I would have him lower me to 3.0, but had to have it compounded yesterday because I am leaving for vacation tomorrow. But, I will talk to him about it. My pharm. compounds it into 4.5, but if they did 1.5, then it could be adjusted...that is another thing that I need to write down to discuss. If I don't write stuff down, I will forget something important to talk to him about.
• Reply #7 06/30/09  10:34am
  
  oneblh
  hey mskc, lol...tv...hell, I almost forgot!!! HA!
  went good, four attendees, 2 LDN users and 2 considering, never made it to the disability issue, did learn a few things though, did ya know that there is a LDN group on yahoo with over 6000 members?? this might be a great place to ask this question, it is on my "todo" list, good luck with the nuero
  
• Reply #8 07/21/09  11:30pm
  
  Nellynumb
  To be honest from what Ive heard, people are doing just as well if not better on LDN, personally Id rather live my life with no side effects and be able to conduct a near normal life. Yes the MS taps me on the shoulder now and then, but hey compared to life on Rebiff I feel 100% better, I just wish it would work for everyone like that. I started on LDN within the first year of being diagnosed and like Larry, I take nothing else. :-)
• Reply #9 08/02/09  2:45pm
  
  oneblh
  well all, day 52, sleeping issues have pretty much resolved, yes~LDN seems to be working for me, no~I am not cured, yes~I still have MS, no~I am not skipping down the road, yes~I am feeling better than I have felt in a long time, no~I do not miss the injections, yes~I have missed a couple of doses of LDN and it was noticeable, no~I do not know what I would be like if I never started taking LDN, yes~I will continue the LDN, no~it is not a cure all, yes~I wish I would have known about this from the beginning.
  
  Attitude is Everything
• Reply #10 08/02/09  4:29pm
  
  MSKC
  Day 57 for me~no not cured~yes, thinking better~no tremors~no drop foot~able to walk the dog~no cane~no walker~still severe fatigue~new neuro thinks that I have responded so well to LDN that he doesn't think I have MS~yes I am pissed at neuro~no I am not going to stop taking it, for sure.

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