I take LDN and no other MS drugs since 2007
Hi there. I have been taking LDN - low dose naltrexone since 2007. I did try Copaxone for a very short duration in 2007/2008 but stopped using it pretty quickly due to allergy intolerance to it. I am hyper sensitive to pretty much any medication I have tried.
At first I had to have it compounded but now I take it in liquid form 3mg at bedtime. I tried using 4.5mg but my spasticity worsened so I went back down to 3mg. I have NOT gotten any new lesions since early 2008 from being on the LDN.
What I will explain quickly is that when they finally ordered an MRI in my case I had already been suffering with symptoms for 14 years. By the time I was taken seriously and they ordered the MRI, I already had a very heavy lesion burden in all areas of the brain and many of them are tumefactive sized larger than 2.5 centimeters, as opposed to the usual millimeter measurements. And then I have an on going area in my neck/cervical spine with lesions. When found, I was not actually having a lot of serious symptoms.
The LDN has done its job in keeping any new lesions from showing up on MRI. I have had MRI's done every year and I would like to stop having them done except I keep coming up with new worsening symptoms in my 40's now and so my neurologist likes to make sure nothing new has occurred. What I believe is that I am basically "Paying the Piper" so to speak for all of that damage that was already there, its moved on to a neuro-degenerative state just by the sheer volume of it all.
I now have a lot of chronic back, hip, leg and arm pain with a lot of weakness and worsening fatigue. But no new lesions. There aren't a lot of MS treatments that deal with progression of disability and from the research I have done in to the clinical trials and the labels of every MS treatment not one of them continues to treat progression of disability for any length of time. So I have stuck with the LDN because it has no side effects for me and is inexpensive, although I have great insurance.
I had Neuropschological testing done. Well, the best they can do here in Nevada and they found below average in math now and a small processing issue. Otherwise I tested normal in all other areas.
For me, the LDN has done what its supposed to do as far as lesion activity goes. I also go to great lengths to watch my diet, take vitamins and supplements, avoid MSG, GMO's, Artificial sweeteners and sugars, enriched ingredients and processed foods. I try to exercise but that's getting harder and harder to do. This year I have had every kind of blood work you can imagine to make sure I don't have rheumatoid arthritis or thyroid problems, both which run in the family. All of my testing came back totally normal. My vitamin D and B12 levels are both in the high normal range as well as every other blood test they did. I just wanted to rule out anything else that would attribute to the new symptoms, weakness, worsening pain and fatigue. But there isn't anything else.
MS is such a strange disease. From the research I have done there are a number of people who no longer get lesions but still progress in to a different stage of the disease. I believe that is the phase I am in since I am fighting to keep my leg/s working now.
Originally posted by LillyMS
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At first I had to have it compounded but now I take it in liquid form 3mg at bedtime. I tried using 4.5mg but my spasticity worsened so I went back down to 3mg. I have NOT gotten any new lesions since early 2008 from being on the LDN.
What I will explain quickly is that when they finally ordered an MRI in my case I had already been suffering with symptoms for 14 years. By the time I was taken seriously and they ordered the MRI, I already had a very heavy lesion burden in all areas of the brain and many of them are tumefactive sized larger than 2.5 centimeters, as opposed to the usual millimeter measurements. And then I have an on going area in my neck/cervical spine with lesions. When found, I was not actually having a lot of serious symptoms.
The LDN has done its job in keeping any new lesions from showing up on MRI. I have had MRI's done every year and I would like to stop having them done except I keep coming up with new worsening symptoms in my 40's now and so my neurologist likes to make sure nothing new has occurred. What I believe is that I am basically "Paying the Piper" so to speak for all of that damage that was already there, its moved on to a neuro-degenerative state just by the sheer volume of it all.
I now have a lot of chronic back, hip, leg and arm pain with a lot of weakness and worsening fatigue. But no new lesions. There aren't a lot of MS treatments that deal with progression of disability and from the research I have done in to the clinical trials and the labels of every MS treatment not one of them continues to treat progression of disability for any length of time. So I have stuck with the LDN because it has no side effects for me and is inexpensive, although I have great insurance.
I had Neuropschological testing done. Well, the best they can do here in Nevada and they found below average in math now and a small processing issue. Otherwise I tested normal in all other areas.
For me, the LDN has done what its supposed to do as far as lesion activity goes. I also go to great lengths to watch my diet, take vitamins and supplements, avoid MSG, GMO's, Artificial sweeteners and sugars, enriched ingredients and processed foods. I try to exercise but that's getting harder and harder to do. This year I have had every kind of blood work you can imagine to make sure I don't have rheumatoid arthritis or thyroid problems, both which run in the family. All of my testing came back totally normal. My vitamin D and B12 levels are both in the high normal range as well as every other blood test they did. I just wanted to rule out anything else that would attribute to the new symptoms, weakness, worsening pain and fatigue. But there isn't anything else.
MS is such a strange disease. From the research I have done there are a number of people who no longer get lesions but still progress in to a different stage of the disease. I believe that is the phase I am in since I am fighting to keep my leg/s working now.
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