Aa
Quix and all / update on naltrexone
Hi all,
I have been speaking directly to two people who are the founders of LDN.org. What I found out has really angered me in a way. See what you think?
Quix, pretty much everything that you found out for me was the truth. My doctor should have weaned me off all of my meds. before starting me on the LDN. What I went through where withdraws from the opiates. The LDN blocks pain meds like narcotics from getting to the brain. Since I was taking methadone, oxycodone, lyrica, cymbalta, and prednisone at the time I went through major withdraws. Another thing that angered me was that you should never take any type of steroid with LDN. I was on prednisone.
My doctor had told me that she prescribed LDN to several of her MS patients. How could she have forgotten something so important to tell me. It makes me feel like I'm just money to her and that she never really even read my chart to see what medications I was taking.
I'm so angry right now that I don't even want to talk to her. What would you suggest? Am I being over sensative to the situation. Was it not as bad as I feel like it was. I do know that I felt like someone was tearing me apart from limb to limb with their bare hands. That was real pain and I will never forget what it felt like.
I am still having spasams in my legs and arms. Very hard deliberate jerks. Could this have possibly caused more nerve damage than I already had?
I would apreciate anything you could add.
Thanks for everything.
Carol
PS. Quix, I knew that you where right on,when I read your post but as always you take away from yourself with modesty. Your the greatest!
I have been speaking directly to two people who are the founders of LDN.org. What I found out has really angered me in a way. See what you think?
Quix, pretty much everything that you found out for me was the truth. My doctor should have weaned me off all of my meds. before starting me on the LDN. What I went through where withdraws from the opiates. The LDN blocks pain meds like narcotics from getting to the brain. Since I was taking methadone, oxycodone, lyrica, cymbalta, and prednisone at the time I went through major withdraws. Another thing that angered me was that you should never take any type of steroid with LDN. I was on prednisone.
My doctor had told me that she prescribed LDN to several of her MS patients. How could she have forgotten something so important to tell me. It makes me feel like I'm just money to her and that she never really even read my chart to see what medications I was taking.
I'm so angry right now that I don't even want to talk to her. What would you suggest? Am I being over sensative to the situation. Was it not as bad as I feel like it was. I do know that I felt like someone was tearing me apart from limb to limb with their bare hands. That was real pain and I will never forget what it felt like.
I am still having spasams in my legs and arms. Very hard deliberate jerks. Could this have possibly caused more nerve damage than I already had?
I would apreciate anything you could add.
Thanks for everything.
Carol
PS. Quix, I knew that you where right on,when I read your post but as always you take away from yourself with modesty. Your the greatest!
Kristin~ You go, girl! Nothing wrong with being strong!
Looks looks like I've got the marshmallows, you've got the weenie. ; )
Any other offers for our bonfire buffet?
Zilla*
Looks looks like I've got the marshmallows, you've got the weenie. ; )
Any other offers for our bonfire buffet?
Zilla*
Sorry if I was a bit strong in my opinion of what to do next. I tend to be more of a fighter than someone who can just let things go.
Take care and I hope you have found some relief and peace from your family doc!
Kristin
Take care and I hope you have found some relief and peace from your family doc!
Kristin
I am sorry it took me so long to respond to this post, I missed it somehow.
First, Everything everyone above says is true especially Quix. You are exactly what those lawyers on TV are talking about when they say "pain and suffering"!!!! You have had a trip to Hell and back due to your Doctors incompetence and you deserve to rake her over the coals for that!!!! I am not at all one who thinks that people should go around using the legal system to fight their battles BUT this is a totally different scenario.
You have put your care, and your life, in this Doctors hands and she disregarded your health and obviously put her needs above yours at some point by not reviewing every possible thing that could happen by giving you this medication. The part that angers me the most is that any sane human being would say "hmmm, I am giving someone a narcotic inhibitor . . . . .I wonder if they are on any narcotics and what this will do to them if I give it to them!!!! I mean Freakin DUH!!!! I wonder how many other mistakes like this she has already or will continue to make!
I do not mean to cause you any more pain than you are or have already been in but please document everything you can and get the hospital records to keep in case you decide to proceed later. In the meantime I am praying for you and I hope you will find a Super Hero Neuro like some of the others here have to prove to you they are out there and they are competent - Basically a Quix neurologist!!!!
We here will be waiting for the update and planning the bonfire . . . . . I will bring the weanies . . . .Oh I forgot my neuro is probably busy that day!!!!!!
Take care!
Kristin
First, Everything everyone above says is true especially Quix. You are exactly what those lawyers on TV are talking about when they say "pain and suffering"!!!! You have had a trip to Hell and back due to your Doctors incompetence and you deserve to rake her over the coals for that!!!! I am not at all one who thinks that people should go around using the legal system to fight their battles BUT this is a totally different scenario.
You have put your care, and your life, in this Doctors hands and she disregarded your health and obviously put her needs above yours at some point by not reviewing every possible thing that could happen by giving you this medication. The part that angers me the most is that any sane human being would say "hmmm, I am giving someone a narcotic inhibitor . . . . .I wonder if they are on any narcotics and what this will do to them if I give it to them!!!! I mean Freakin DUH!!!! I wonder how many other mistakes like this she has already or will continue to make!
I do not mean to cause you any more pain than you are or have already been in but please document everything you can and get the hospital records to keep in case you decide to proceed later. In the meantime I am praying for you and I hope you will find a Super Hero Neuro like some of the others here have to prove to you they are out there and they are competent - Basically a Quix neurologist!!!!
We here will be waiting for the update and planning the bonfire . . . . . I will bring the weanies . . . .Oh I forgot my neuro is probably busy that day!!!!!!
Take care!
Kristin
While I often willsay that a doctor is a dufus or stupid or some other delightfully disparaging term I rarely say what I am about to say.
Carol - When a doctor decides to go "off-label" with a treatment or medication - and we often do, especially in pediatrics when there isn't enough money in studying kids to make it worthwhile - that doctor owes it to the patient to know as much about that med as possible. It's basic common sense and careful medicine.
Low Dose Naltexone has been "out there" for a long time" and it is being tried for every disease under the sun it seems. There are no officially sanctioned sites. There is little scientific information. But there are places, lots of them where people talk about their experiences. I had no trouble finding all sorts of little advisories on the med, including the one I posted to you. Your doctor should have been reading the same things if she was going to have someone take this medication. The attitude is that it is as benign (or more) than candy.
Every doctor knows and has known since the first narcotic inhibitors were discovered in the (I dn't know 60's?? I knew all about them by the mid '70's in med school) that if you give a narcotic inhibitor to someone who has been on narcotics for a while for any reason, you will likely preciptate an immediate and often severe withdrawal reaction. In the field, Medicgirl will back me up, if someone is "found down" and respirations are depressed, you give IV glucose and a trial of narcotic inhibitor. You are ready with something like valium if they go into withdrawal. Basic 3rd year medical student knowledge and first year paramedic knowledge.
Sudden severe, withdrawal can be fatal. A person could stroke, have heart or muscle damage, renal failure, and the psychological effect of withdrawal is horrible.
If the LDN people told you it was all "just withdrawal" they were doing you a huge disservice. Yes, you were in withdrawal. But why were you on the methadone and the oxycodone????? Perhaps for the huge and terrible amount of pain your have been in for the last months?? When she gave you a narcotic inhibitor you went form whatever state of pain relief you were in to suddenly all the pain present in your body!!! A normal person would feel the effect of every nerve in their body, because even the endorphins (the body's own opiates) would be blocked. You had all the pain of the MS on TOP OF THAT!!!! That is akin to undergoing surgery without anesthesia.
Another thing that is well-known, is that a slow increase in pain is much more easily tolerated thatn that same amount of pain occuring suddenly. For all the horror that I have seen in my life, what you went through I can't even imagine. I can desribe it, but what you felt, is beyond...........
Your doctor committed gross negligence and malpractice on you in my opinion. It only took me minutes to find the info I posted for you. She knew it too. That's why you didn't see her. She needs her license revoked, also in my opinion, but not before she has compensated you and your family's suffering (as if she could!)
I read that doctor's "explanation" of why there could be an "slight and temproary" increase in pain and MS symptoms. He made little of it. If you read some of these forums people's complaints are sometimes quite severe and everybody rushes in to help them reduce their dose, to tell them how to relieve it and to assure them it's temporary. Even the doctor's words in a way blame the patient for "addiction and 'dependency'". That is quite disengenuous! and it infuriated me. To use those words with someone who is in excrutiating pain and with a chronic, poorly treatable disease is arrogant, dismissive, callous and is spoken by someone who doesn't know that kind of pain. He never mentions that the REAL pain that a person has will also rear it ugly head and be felt.
I have other comments on his "scientific explanation of LDN and how they believe it works." His dismissive and erroneous characterization of the interferons was either ignorance or misleading, being a physician, I supsect the latter.
OKay! Enough ranting from me. I do suspect they will find a role somewhere for LDN, but they are going to have to be more honest about it.
Your doctor DID YOU WRONG!!! Please, do not accept anything she says to excuse herself professionally. I don't won't careless people like her in my profession!
I hope you escaped this and forget those days. I still have info to give you. In the meantime, I want you to find a neurologist in a big university medical center. You will have access to the best possiblilities for treating PPMS and maybe access to a promising study or med trial.
Be back later, Quix
Carol - When a doctor decides to go "off-label" with a treatment or medication - and we often do, especially in pediatrics when there isn't enough money in studying kids to make it worthwhile - that doctor owes it to the patient to know as much about that med as possible. It's basic common sense and careful medicine.
Low Dose Naltexone has been "out there" for a long time" and it is being tried for every disease under the sun it seems. There are no officially sanctioned sites. There is little scientific information. But there are places, lots of them where people talk about their experiences. I had no trouble finding all sorts of little advisories on the med, including the one I posted to you. Your doctor should have been reading the same things if she was going to have someone take this medication. The attitude is that it is as benign (or more) than candy.
Every doctor knows and has known since the first narcotic inhibitors were discovered in the (I dn't know 60's?? I knew all about them by the mid '70's in med school) that if you give a narcotic inhibitor to someone who has been on narcotics for a while for any reason, you will likely preciptate an immediate and often severe withdrawal reaction. In the field, Medicgirl will back me up, if someone is "found down" and respirations are depressed, you give IV glucose and a trial of narcotic inhibitor. You are ready with something like valium if they go into withdrawal. Basic 3rd year medical student knowledge and first year paramedic knowledge.
Sudden severe, withdrawal can be fatal. A person could stroke, have heart or muscle damage, renal failure, and the psychological effect of withdrawal is horrible.
If the LDN people told you it was all "just withdrawal" they were doing you a huge disservice. Yes, you were in withdrawal. But why were you on the methadone and the oxycodone????? Perhaps for the huge and terrible amount of pain your have been in for the last months?? When she gave you a narcotic inhibitor you went form whatever state of pain relief you were in to suddenly all the pain present in your body!!! A normal person would feel the effect of every nerve in their body, because even the endorphins (the body's own opiates) would be blocked. You had all the pain of the MS on TOP OF THAT!!!! That is akin to undergoing surgery without anesthesia.
Another thing that is well-known, is that a slow increase in pain is much more easily tolerated thatn that same amount of pain occuring suddenly. For all the horror that I have seen in my life, what you went through I can't even imagine. I can desribe it, but what you felt, is beyond...........
Your doctor committed gross negligence and malpractice on you in my opinion. It only took me minutes to find the info I posted for you. She knew it too. That's why you didn't see her. She needs her license revoked, also in my opinion, but not before she has compensated you and your family's suffering (as if she could!)
I read that doctor's "explanation" of why there could be an "slight and temproary" increase in pain and MS symptoms. He made little of it. If you read some of these forums people's complaints are sometimes quite severe and everybody rushes in to help them reduce their dose, to tell them how to relieve it and to assure them it's temporary. Even the doctor's words in a way blame the patient for "addiction and 'dependency'". That is quite disengenuous! and it infuriated me. To use those words with someone who is in excrutiating pain and with a chronic, poorly treatable disease is arrogant, dismissive, callous and is spoken by someone who doesn't know that kind of pain. He never mentions that the REAL pain that a person has will also rear it ugly head and be felt.
I have other comments on his "scientific explanation of LDN and how they believe it works." His dismissive and erroneous characterization of the interferons was either ignorance or misleading, being a physician, I supsect the latter.
OKay! Enough ranting from me. I do suspect they will find a role somewhere for LDN, but they are going to have to be more honest about it.
Your doctor DID YOU WRONG!!! Please, do not accept anything she says to excuse herself professionally. I don't won't careless people like her in my profession!
I hope you escaped this and forget those days. I still have info to give you. In the meantime, I want you to find a neurologist in a big university medical center. You will have access to the best possiblilities for treating PPMS and maybe access to a promising study or med trial.
Be back later, Quix
I couldn't add anything that would sound better than what Zilla said.
I am so sorry you had to go thru this. I thought drs were suppose to keep on top of medications and know which ones you couldn't mix. I really don't think they even care, it seems to be few and far between the good caring drs, may we hope and pray that all of us on here can manage to find one of the good guys or gals which ever the case.
I hope you are feeling better today and that there wasn't any damage done due to the idiot you were having to deal with.
Best of luck
Doni
I am so sorry you had to go thru this. I thought drs were suppose to keep on top of medications and know which ones you couldn't mix. I really don't think they even care, it seems to be few and far between the good caring drs, may we hope and pray that all of us on here can manage to find one of the good guys or gals which ever the case.
I hope you are feeling better today and that there wasn't any damage done due to the idiot you were having to deal with.
Best of luck
Doni
Sorry for all you have been going through. It sounds awful. I hope you continue to recover and no permanent damage was done to your already suffering body.
Wanna
Wanna
I don't think enough of us got the chance to let Carol know how glad we are that she got through her ordeal recently. I know many did while I took a break from the forum. Anyone want to give her a "Yea, Carol!"
I'm bumping her back up to the top so we can do just that!
Momzilla*
I'm bumping her back up to the top so we can do just that!
Momzilla*
Your feelings are your feelings. You either have them or you don't. Their your own. You are the only one who knows how you feel. So you tell us, Carol. Are you being overly sensitive? If you felt like you were being ripped limb from limb with bare hands, that's how you felt. That's a pretty awful way to feel!
I am still angry at your doctor and I have never met her. What a disaster! That's how I feel! I am livid! I am shaking as I type this!! I am getting angrier by the second.
I don't know how you contain yourself. But I cannot tell you how to feel. And getting angry doesn't solve anything. But, boy, am I angry! We have dealt with some defective neuros on this forum, but I don't even know what to say here!
All I will say is I'm sorry my friend, our friend, Carol, has had to endure such an awful, miserable, horrific torture, and we're just so thankful you pulled through, Hotwheels. It is a testament to your steely faith and that chutzpah I talked to you about before. Wow. Don't go shaking your doctor's hand if she offers it any time soon. She doesn't deserve it.
Let Quix answer the nerve damage q's, I hope no more has been done. I say we burn her at the stake! I'll bring the marshmallows!
Take care,
Chris*
I am still angry at your doctor and I have never met her. What a disaster! That's how I feel! I am livid! I am shaking as I type this!! I am getting angrier by the second.
I don't know how you contain yourself. But I cannot tell you how to feel. And getting angry doesn't solve anything. But, boy, am I angry! We have dealt with some defective neuros on this forum, but I don't even know what to say here!
All I will say is I'm sorry my friend, our friend, Carol, has had to endure such an awful, miserable, horrific torture, and we're just so thankful you pulled through, Hotwheels. It is a testament to your steely faith and that chutzpah I talked to you about before. Wow. Don't go shaking your doctor's hand if she offers it any time soon. She doesn't deserve it.
Let Quix answer the nerve damage q's, I hope no more has been done. I say we burn her at the stake! I'll bring the marshmallows!
Take care,
Chris*
Every word you just posted is exactly what I wanted to say but I was afraid everyone would think I was way over reacting. Personally, I would like to turn her in to someone but I don't know who. (I don't mean a frog either)lol
I go see my family doctor tomorrow who was with me through this ordeal and he did order several test to check for damages, so maybe I'll find out something from him tomorrow.
Thank you for saying it for me.
Carol
I go see my family doctor tomorrow who was with me through this ordeal and he did order several test to check for damages, so maybe I'll find out something from him tomorrow.
Thank you for saying it for me.
Carol
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
