Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Hi jc -- Thanks for expressing your concerns so concisely. You asked: > ... has anyone experienced slight worsening with L'hermitte's on LDN? -- I won't say that my L'H got worse, but it did change. It went from an intense shock down my right leg, to a milder shock, and then to a generalized intermittent weekness in the leg, which is easier to deal with than the LH. This happened over a course of several months. > ... Were you on 4.5 or 3.o? -- 3.0. > 5.Should I wait for my follow up with the doctor and disregard Bill's > advice as he doesnt seem to know who the other major supporters of > Bihari and LDN are? -- I'm not sure how to answer this one. I'm not a patient of Dr. Bihari, I only know what I have heard others say. I was at the Conference in June, and Bihari didn't attend because he was ill; his keynote address was delivered via audio tape with accompanying slides. Dr. B has been ill for some time; he is an elderly man, and has suffered some injuries over the past year. can supply the details. I don't know if he's even seeing patients anymore. As for him not knowing who Dr. Lawrence is, it's possible that Dr B doesn't follow the international/internet LDN " movement " as carefully as a younger, healthier man might. I know he does not maintain the site himself. I believe Bill is an office assistant; he might not know very much about " who said what " and perhaps miscommunicated the question. I have a question for you, jc... how long has L'Hermittes been a symptom? -- Gazorpa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Hey there Gazorpa! Thanx so much for responding and sharing. Its encouraging to hear especially when you hear people saying they felt better overnight and in 3 days when that is not your experience. So thank you again. Yes I am aware of Dr. Bihari's condition. In fact my initial phone consultation with him was from his rehab center. And that was on 11/9/05. But i think I read or heard somewhere that he is home now. I do believe he will continue to see patients if you're in the NYC area, which is where I am. Hope I didnt confuse you with the website issue. But to clarify, it was Bill who did not know who Dr. Lawernce was and told me to disregard. I have had the LH for about 5-6 weeks now. it was HERENDOUS at first. Then lessoned to a sensation and not a SHOCK. It feels like a pulling. Plus I have the buzzing/vibrating thingy that I assume is part of the LH sign also. I'd like to say that after taking the LDN (which was about a month or so into the LH) I noticed that at certain times of the day it is less than other times which sounds like an improvement. But this numb hand deal is throwing me bec I did not have that previously. In either case, I don't want to celebrate just yet bec I want to be able to say I consistently feel better each day all day for a few days. Make sense? Why do you ask? How long had you had your LH prior to starting LDN? I'm praying this is not permanent nerve damage. You know its kind of a trip when you're taking something that stops disease progression and it has no side affects. It makes you wonder, " Is it really working? " Not complaining, but just noticing how your mind works when it has been engrained in your head that something is incurable (not that this is a cure but u get my drift). Again, sorry for the long post. I'm a chatter is the worst way. --jc A Worrier of the Light sometimes thinks: " If I do not do something, it will not be done " . It is not quite like that: He must act, but he must allow room for the Universe to act too. --o Coelho Hey there Gazorpa! Thanx so much for responding and sharing. Its encouraging to hear especially when you hear people saying they felt better overnight and in 3 days when that is not your experience. So thank you again. Yes I am aware of Dr. Bihari's condition. In fact my initial phone consultation with him was from his rehab center. And that was on 11/9/05. But i think I read or heard somewhere that he is home now. I do believe he will continue to see patients if you're in the NYC area, which is where I am. Hope I didnt confuse you with the website issue. But to clarify, it was Bill who did not know who Dr. Lawernce was and told me to disregard. I have had the LH for about 5-6 weeks now. it was HERENDOUS at first. Then lessoned to a sensation and not a SHOCK. It feels like a pulling. Plus I have the buzzing/vibrating thingy that I assume is part of the LH sign also. I'd like to say that after taking the LDN (which was about a month or so into the LH) I noticed that at certain times of the day it is less than other times which sounds like an improvement. But this numb hand deal is throwing me bec I did not have that previously. In either case, I don't want to celebrate just yet bec I want to be able to say I consistently feel better each day all day for a few days. Make sense? Why do you ask? How long had you had your LH prior to starting LDN? I'm praying this is not permanent nerve damage. You know its kind of a trip when you're taking something that stops disease progression and it has no side affects. It makes you wonder, "Is it really working?" Not complaining, but just noticing how your mind works when it has been engrained in your head that something is incurable (not that this is a cure but u get my drift). Again, sorry for the long post. I'm a chatter is the worst way. --jcA Worrier of the Light sometimes thinks: "If I do not do something, it will not be done". It is not quite like that: He must act, but he must allow room for the Universe to act too. --o Coelho Hi jc -- Thanks for expressing your concerns so concisely. You asked: > ... has anyone experienced slight worsening with L'hermitte's on LDN? -- I won't say that my L'H got worse, but it did change. It went from an intense shock down my right leg, to a milder shock, and then to a generalized intermittent weekness in the leg, which is easier to deal with than the LH. This happened over a course of several months. > ... Were you on 4.5 or 3.o? -- 3.0. > 5.Should I wait for my follow up with the doctor and disregard Bill's > advice as he doesnt seem to know who the other major supporters of > Bihari and LDN are? -- I'm not sure how to answer this one. I'm not a patient of Dr. Bihari, I only know what I have heard others say. I was at the Conference in June, and Bihari didn't attend because he was ill; his keynote address was delivered via audio tape with accompanying slides. Dr. B has been ill for some time; he is an elderly man, and has suffered some injuries over the past year. can supply the details. I don't know if he's even seeing patients anymore. As for him not knowing who Dr. Lawrence is, it's possible that Dr B doesn't follow the international/internet LDN " movement " as carefully as a younger, healthier man might. I know he does not maintain the site himself. I believe Bill is an office assistant; he might not know very much about " who said what " and perhaps miscommunicated the question. I have a question for you, jc... how long has L'Hermittes been a symptom? -- Gazorpa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Hi jc, Like you I am having problems with numbness in my hands. Also a buzzing, crawling feeling over different parts of my body. The numbness is also affecting my feet. The hand numbness is something new for me. I know what you mean by hearing of others who felt good overnight. I was so hoping to experiance that! The one thing I do have to think is, this drug has to be doing something to my ms. If it weren't I wouldn't be experiancing anything in regards to my ms. Good or otherwise. I have been taking 3 mg for a week now. Good luck! > > Hey there Gazorpa! Thanx so much for responding and sharing. Its encouraging to hear especially when you hear people saying they felt better overnight and in 3 days when that is not your experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Hi , Hang in there as long as you feel it is easily bearable. You might want to play around with the dosage, but I would wait it out a bit to see if it clears up first. It takes time sometimes to work through the problems. I have heard of people feeling worse before getting better. Everyone's body is different. Please keep us posted Aletha [low dose naltrexone] Re: LDN & L'hermittes > Hi jc, Like you I am having problems with numbness in my hands. Also > a buzzing, crawling feeling over different parts of my body. The > numbness is also affecting my feet. > The hand numbness is something new for me. I know what you mean by > hearing of others who felt good overnight. I was so hoping to > experiance that! The one thing I do have to think is, this drug has to > be doing something to my ms. If it weren't I wouldn't be experiancing > anything in regards to my ms. Good or otherwise. I have been taking 3 > mg for a week now. > Good luck! > >> >> Hey there Gazorpa! Thanx so much for responding and sharing. Its > encouraging to hear especially when you hear people saying they felt > better overnight and in 3 days when that is not your experience. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Goos Luck to you too ! We must keep in touch and keep one another updated. I'm encouraged to know that we have similar experiences and are starting LDN at the same time. Please stay in contact. --jc A Worrier of the Light sometimes thinks: " If I do not do something, it will not be done " . It is not quite like that: He must act, but he must allow room for the Universe to act too. --o Coelho Goos Luck to you too ! We must keep in touch and keep one another updated. I'm encouraged to know that we have similar experiences and are starting LDN at the same time. Please stay in contact. --jcA Worrier of the Light sometimes thinks: "If I do not do something, it will not be done". It is not quite like that: He must act, but he must allow room for the Universe to act too. --o Coelho Hi jc, Like you I am having problems with numbness in my hands. Also a buzzing, crawling feeling over different parts of my body. The numbness is also affecting my feet. The hand numbness is something new for me. I know what you mean by hearing of others who felt good overnight. I was so hoping to experiance that! The one thing I do have to think is, this drug has to be doing something to my ms. If it weren't I wouldn't be experiancing anything in regards to my ms. Good or otherwise. I have been taking 3 mg for a week now. Good luck! > > Hey there Gazorpa! Thanx so much for responding and sharing. Its encouraging to hear especially when you hear people saying they felt better overnight and in 3 days when that is not your experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Forgot to ask you , did you go thru Bihari? In either case, why did you start at 3.0 instead of 4.5? --jc A Worrier of the Light sometimes thinks: " If I do not do something, it will not be done " . It is not quite like that: He must act, but he must allow room for the Universe to act too. --o Coelho Forgot to ask you , did you go thru Bihari? In either case, why did you start at 3.0 instead of 4.5? --jcA Worrier of the Light sometimes thinks: "If I do not do something, it will not be done". It is not quite like that: He must act, but he must allow room for the Universe to act too. --o Coelho Hi jc, Like you I am having problems with numbness in my hands. Also a buzzing, crawling feeling over different parts of my body. The numbness is also affecting my feet. The hand numbness is something new for me. I know what you mean by hearing of others who felt good overnight. I was so hoping to experiance that! The one thing I do have to think is, this drug has to be doing something to my ms. If it weren't I wouldn't be experiancing anything in regards to my ms. Good or otherwise. I have been taking 3 mg for a week now. Good luck! > > Hey there Gazorpa! Thanx so much for responding and sharing. Its encouraging to hear especially when you hear people saying they felt better overnight and in 3 days when that is not your experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 That's the GOOD feeling a feeling of healing. Seems to be common feelings we get through the early months. I thought those were good things, my body felt like it was waking things up from days gone by and addressing them. The first time my hands went numb I realized I was leaning on it, as I often used to, I just hadn't felt those pins and needles sensations in so long I didn't realize what was going on. I thought they were normal reactions to stimuli. Considering I've seen improvements over time, I'm assuming those are long term healings. Definitely not boring, and some sensations seem to last less than the FEAR it triggers when you wonder what's going on. I think some people may have problems because they're taking LDN, getting their body into a positive momentum healing, and then they get scared, adjust their dose, or stop the pills for a few days... but then the body is more vulnerable. Good luck to ya Tonight is #950 for me, 3MG except for a 38 day run of 4.5 and a few months later for 2 weeks at 4.5 and I did those trial periods when things were going well, at least at the start of 'em, anyway. So it's 3.0 MG for me, every day, shortly after midnight; no breaks, no changes in dose. I've also been taking a B1 100mg every night with it since July 1 this year. [low dose naltrexone] Re: LDN & L'hermittes Hi jc, Like you I am having problems with numbness in my hands. Also a buzzing, crawling feeling over different parts of my body. The numbness is also affecting my feet.The hand numbness is something new for me. I know what you mean by hearing of others who felt good overnight. I was so hoping to experiance that! The one thing I do have to think is, this drug has to be doing something to my ms. If it weren't I wouldn't be experiancing anything in regards to my ms. Good or otherwise. I have been taking 3 mg for a week now.Good luck! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Hi Aletha, I am going to take a wait and see approach before I mess with the dosage. When my body adjusts I will ask about a 4.5 regime. I really don't want to decrease. It almost feels like a step back. Lol! Thats how my brain thinks. I will keep you posted! I may drive ya all nuts but I will keep ya posted! Lol! Take Care > Hi , > > Hang in there as long as you feel it is easily bearable. You might want to > play around with the dosage, but I would wait it out a bit to see if it > clears up first. It takes time sometimes to work through the problems. I > have heard of people feeling worse before getting better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 I will Janine! > Goos Luck to you too ! We must keep in touch and keep one another updated. I'm encouraged to know that we have similar experiences and are starting LDN at the same time. Please stay in contact. --jc > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 No I didn't go through Bihari. I had heard of ldn last year but forgot about it until an online friend with ms started it. She claimed it turned her life around so I asked my neuro. about it. She had no problem prescribing as she had heard of it. Her thinking was it was such a low dose that she could not see any harm. It had already been tested for efficacy at a higher dose. She only has one other patient on it and doesn't follow that patient. I think the main reason she gave me a script was because I had a rough time with the copaxone, avonex and trying to get into her study at the time with tysibri. Good thing that one didn't pan out! I doubt very much that she would normally prescribe this. Thats why its good to know Dr. Bihari is out there. I doubt very much my neuro. could answer any ldn questions. She prescribed the 3.0 by looking at the literature I printed out. I believe one section mentioned starting at 3.0. It actually was good because I get side effects from everything. This way I can build myself up. Take Care > > Forgot to ask you , did you go thru Bihari? In either case, why did you start at 3.0 instead of 4.5? --jc > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.