Guest guest Posted March 20, 2011 Report Share Posted March 20, 2011 Hi Johanna Yes. for people with MS that are prone to spasms it can initally get more uncomfortable. I personally dont dont of anyone here that takes Tysabri with LDN. IF you can wait out the spasms as far as I know it will get better. I say that as I`ve been reading this board for over five years and to my knowledge the spasms do get better for most. Of course theres no read way of knowing until you do it and it`s easy to say just put up with it! I think the backsliding will not be permanent and it`s just a transitional thing. There are wiser people here than me that I`m sure will provide links to information about why "it can get worse before it gets better". In the meantime is there anything to can take to get some relief from the spasms? Good luck and I hope you stick with it.Bev low dose naltrexone From: biobakerjb@...Date: Sun, 20 Mar 2011 15:39:13 -0700Subject: [low dose naltrexone] New Member -need your help! Hello, I have had an aggressive MS since 1986. Have been on CaEAP for 23 yrs. That held me in good stead for many years. More trouble in the last 10 yrs. Recently, in the last 2 years been on tysabri. Was hospitalized in February for 5 days with a bleeding ulcer. Stopped tysabri, felt my immune system got too compromised that the h-pylori bacteria took hold to create the bleeding ulcer. I wanted to try the low dose naltrexone to see if that would help me. I started on 4.5 mg and had a bad reaction, dose too high. Then started on 3 mg ldn I took it for a week and have had such serious spasms and was in such terrible pain, felt that dose was too high and will start on 1mg ldn on Monday. I have continued to get much worse. I am at a point now that I am having a hard time getting up and transferring. Question? Does anyone have experience with the severe spasms and ldn and it getting better and having recovering of symptoms and regaining of strength and functioning? Does anyone have experience of taking tysabri and ldn? I am feeling at a crossroads and wondering what I should do next so I don’t become a complete invalid. Thank You so very much for any encouragement and assistance you can offer me, Johanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 I started LDN two nights ago at a dose of 3 mg. All day I have felt like I had way too much coffee, even though I now avoid caffeine and don't drink any type of coffee. Has anyone else experienced this reaction? Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 I have had this feeling often.Some days worse than others. I also just want to say that I think certain people are more sensitive to LDN than others. I started at 1mg on Dec 25, then 2 mg for 2 months and am now having a hard time getting on 3 mg. On 3mg I am experiencing more pain and all over feeling unwell. I called Skips and they suggested alternating nights between 2 and 3 mg but so far on the nights I take 3mg, I do not feel well the next day. I can’t imagine ever being able to go to 4.5 let alone starting at that dose as some have suggested. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 DianeAnother option would be to buy the tabs and make yourself. Its a much purer way to go. Good LuckGSent from my Verizon Wireless BlackBerryFrom: "Diane" <dballai@...>Sender: low dose naltrexone Date: Sun, 20 Mar 2011 20:55:26 -0400<low dose naltrexone >Subject: [low dose naltrexone] Re: New Member -need your help! I have had this feeling often.Some days worse than others. Ialso just want to say that I think certain people are more sensitive to LDNthan others. I started at 1mg on Dec 25, then 2 mg for 2 months and am nowhaving a hard time getting on 3 mg. On 3mg I am experiencing more pain and allover feeling unwell. I called Skips and they suggested alternating nightsbetween 2 and 3 mg but so far on the nights I take 3mg, I do not feel well thenext day. I can’t imagine ever being able to go to 4.5 let alone startingat that dose as some have suggested. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 hi johanna - my ms is all in my legs, cramps, stiffness, spasms, neuro pain etc and yes ldn does exasperate symtoms and from research now take calcium and magnesiumm, as well as baclofen [day] and clonezepam [night] taken 4 months from 1ml to get on 4.5mg and leg problems not any worse so hang on in there regards/peter/london/ppms Hello, I have had an aggressive MS since 1986. Have been on CaEAP for 23 yrs. That held me in good stead for many years. More trouble in the last 10 yrs. Recently, in the last 2 years been on tysabri. Was hospitalized in February for 5 days with a bleeding ulcer. Stopped tysabri, felt my immune system got too compromised that the h-pylori bacteria took hold to create the bleeding ulcer. I wanted to try the low dose naltrexone to see if that would help me. I started on 4.5 mg and had a bad reaction, dose too high. Then started on 3 mg ldn I took it for a week and have had such serious spasms and was in such terrible pain, felt that dose was too high and will start on 1mg ldn on Monday. I have continued to get much worse. I am at a point now that I am having a hard time getting up and transferring. Question? Does anyone have experience with the severe spasms and ldn and it getting better and having recovering of symptoms and regaining of strength and functioning? Does anyone have experience of taking tysabri and ldn? I am feeling at a crossroads and wondering what I should do next so I don’t become a complete invalid. Thank You so very much for any encouragement and assistance you can offer me, Johanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 ,Thank you for your response. Can you tell me what ldn has done FOR you? I do take extra calcium and magnesium as part of my regular regimen. How does the clonezepam make a difference for you? I tried it one,  time years back and it just made me tired with no results for spasticity. How is your mobility?Thanks so much for your response.Johanna From: Nicholls [mailto:peter.nicholls@...] Sent: Monday, March 21, 2011 9:33 AMJohanna & Jim Baker; lowsenaltrexonegroups (DOT) com Subject: Re: [low dose naltrexone] New Member -need your help! hi johanna - my ms is all in my legs, cramps, stiffness, spasms, neuro pain etc and yes ldn does exasperate symtoms and from research now take calcium and magnesiumm, as well as baclofen [day] and clonezepam [night] taken 4 months from 1ml to get on 4.5mg and leg problems not any worse so hang on in there regards/peter/london/ppms Hello,I have had an aggressive MS since 1986. Have been on CaEAP for 23 yrs. That held me in good stead for many years. More trouble in the last 10 yrs. Recently, in the last 2 years been on tysabri. Was hospitalized in February for 5 days with a bleeding ulcer. Stopped tysabri, felt my immune system got too compromised that the h-pylori bacteria took hold to create the bleeding ulcer. I wanted to try the low dose naltrexone to see if that would help me. I started on 4.5 mg and had a bad reaction, dose too high. Then started on 3 mg ldn I took it for a week and have had such serious spasms and was in such terriblepain, felt that dose was too high and will start on 1mg ldn on Monday. I have continued to get much worse. I am at a point now that I am having a hard time getting up and transferring. Question? Does anyone have experience with the severe spasms and ldn and it getting better and having recovering of symptoms and regaining of strength and functioning? Does anyone have experience of taking tysabri and ldn? I am feeling at a crossroads and wondering what I should do next so I don’t become a complete invalid. Thank You so very much for any encouragement and assistance you can offer me,Johanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 hi johanna and good to hear from you they say ldn is long term fix so why does anybody expect to take this after a couple of weeks and inspect to see improvements is beyond me, everyone of us ms'ers are different, there are no two alike, so how can you expect any drug to work the same for all, beyond me doc asked me what symptoms i had on ldn, i said i saw them on the tv every late afternoon, he didnt have a clue what i was talking about i only listen to those 'specialists' that have ms, how the hell can any doc, ms nurse, consultant, know what it's like unless they have it and for the 'crab' treatments, well me, improvements in bladder, bowels, depression, standing, can just about to walk on a frame from my bed to my wet-room and back, 8 steps, but my ms is progressive and all in my legs i have copied in an email group called 'mscured' has there been anybody cured? baclofen during day 10mg x 3 a day helps but not too much as you may get 'rubber' legs clonazepam .5mg x 3 a night just setlles my legs down and helps me sleep yes to calcium and magnesium at night accoring to doc bob lawrence, read this: http://www.webspawner.com/users/sideeffectsofldn/index.html dont take any other vitamins and supplements, if you did how do you know whats working, and theres a cost stay tuned best regards peter From: Johanna & Jim Baker <biobakerjb@...>' Nicholls' <peter.nicholls@...>; "'lowsenaltrexonegroups (DOT) com '" <low dose naltrexone >Sent: Monday, 21 March 2011, 21:07Subject: RE: [low dose naltrexone] New Member -need your help! , Thank you for your response. Can you tell me what ldn has done FOR you? I do take extra calcium and magnesium as part of my regular regimen. How does the clonezepam make a difference for you? I tried it one, time years back and it just made me tired with no results for spasticity. How is your mobility? Thanks so much for your response. Johanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 At the bottom of every individual message is how to log on to the newsgroup online. There you can switch your subscription to Daily Digest so that you will receive one or two posts per day with 25 in each email. That is a huge savings in time and frustration. You can even read the posts right on the newsgroup website as I do. I will send this to the list since others might have the same problem. Francie http://LDN-for-MS.com > > Hi - is it possible to get LDN posts in a batch rather than loads of > individual ones? > > Thanks to anyone who replies, its just there are a lot! > > Louise. Quote Link to comment Share on other sites More sharing options...
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