3 nights on LDN and so far, no changes noticed. I am waking up at 3 am - unable to get back to sleep before the 5 am alarm goes off....Im only taking 1.5 mgs at this time, Skip says stay at that level for a month. Is the insomnia going to stop?
LDN: After a failed attempt at Copaxone (allergic reaction) I have been on Rebif for almost 6 years. This year, nothing but problems with site reactions and ongoing pain. I stopped it ten days ago and am axiously awaiting my first shipment of LDN. I only hope and pray that I have the same results that some of you have had! fingers crossed....
Do any of you guys know of any physicians who prescribe LDN in the central Florida area? (orlando, apopka, oviedo, etc.)
Re: Low Dose Naltrexone (LDN) — I have started LDN a few weeks ago. My fatigue has reduced considerably, Bladder issue has almost gone and pain in legs has also been addressed. Only spasicity in right hand and legs still bother me. hope LDN will help me here also.
Re: Fatigue — Can't say what causes it. It could be hot weather, physical exertion or stress. It used to drains me out
Re: Fatigue — I wake up tired and go to bed after tea. I am taking fadafulin but with my other tablet, they are making me more tired
Re: Low Dose Naltrexone (LDN) — Two years ago, I CAUTIOUSLY took myself off traditional MS medication which was one year after starting LDN (Low Dose Naltrexone) to test if I would be able to live without Copaxone. Any little change in my health would cause me to question if I made the right decision. I knew it was a good decision but didn’t have the proof in hand. Last week I requested to have an MRI done. This is the first one since 2008. Success! No changes period. This is NOT what you would typically hear from any MS patient.
So today I am even more determined to help others. Anyone with an auto-immune disease please let me know. I am here to help you. Adam adamsuranyi@yahoo.com
Re: Low Dose Naltrexone (LDN) — For me it has been almost miraculous. Ten years into treatment (Avonex, etc) I was going downhill and on the verge of giving up my career due to extreme fatigue, body aches, and malaise, plus miserable relapses esp. in summer. The most difficult challenge was finding a doctor who would allow me to try LDN. I had no negative side effects and felt better almost immediately. After 14 mos-it has given me my life back: no relapses even under extreme stress-and much improved vitality. I feel very fortunate to have found this but fear that when my current doctor retires I will lose access to LDN.
Re: Low Dose Naltrexone (LDN) — When I first went on LDN, I had really weird dreams, but they have subsided. I feel wonderful and am grateful for my increased energy level. I was diagnosed five years ago and have never taken any drugs. Thought I would try this first. I have lost 50 pounds, I bike ride and I am active in the summer months, and hope this keeps up. Additionally, my bladder leakage has stopped! The doctors said this was due to having two large babies and didn't think it was related to MS. However, why would it stop after ten years of problems - huh?
Re: Low Dose Naltrexone (LDN) — I have been on LDN for about 9 months now and I am doing well. The bladder problems that I blamed on having kids, has now mysteriously dissappeared.
Re: Numbness — tips of fingers and toes numb
Re: Muscle weakness — weak rt leg and rt arm and rt hand
Re: Poor balance — bouncing off the walls all over the house
Re: Low Dose Naltrexone (LDN) — Lack of sleep the first few nights. No other issues noticed.
Re: Low Dose Naltrexone (LDN) — Felt stronger after first day. Been taking 3.5 mg nightly for one month now and I notice being able to do more every day (had trouble with walking and balance). The symptoms are still evident, but LDN has been a remarkable tool and I continue to believe the crippling effects of my MS will fade away in time. I have not taken any other medication(s) for MS even though they were prescribed to me upon diagnosis. LDN, however, made sense.
Re: Jumping muscles — spasticity in evening when sitting in one position for over hour +
Re: Cognitive dysfunction — use wellbutrin when too much activity directed at me; questions fired at me quickly at work
Re: Gait problems — off balance, use walker for need to get someplace faster, use electric wheelchair for malls and outside long distances
Re: Gait problems — walk with cane for better balance
Re: Optic neuritis (loss of vision) — This also gets better for me if I rest, overexerting myself in the summer brings loss of vision on to me, in addition to loss of mobility- everything shuts down when I'm overheated.
Re: Bladder — I've been on ditropan & flomax, neither has worked, would love to know a medication that did work
I've started acupuncture, hoping it helps
Re: Low Dose Naltrexone (LDN) — The only side effects were related to increased endorphins: more energy, to almost anxious, since I had not felt them in so long.
The LDN not only stopped the progression of my MS, which Copaxone for 9 years did not, but I have actually reversed most of the symptoms brought on by MS, such as brain fog, fatigue, balance issues, numbness in hands and feet. When starting, I was often abed for days at a time.
In the two years since starting LDN, I have traveled to Italy and Slovenia, climbed every monument, had surgery in Mexico and run a full-time business. All of these were not even on the wish list when suffering from MS.
I know that I still have MS (I only have to go off the LDN for a week to remember exactly what it was like), but if I don't have to suffer from the symptoms, it is irrelevant in my life now. It is cheap, safe and works for me and many others.
Re: Low Dose Naltrexone (LDN) — Was on copaxone and tysabri....stopped both of those in 2008 and have been ramped up to 4mg of LDN for last two years. I take it every night. I feel normal again and no issues or further progression. My doctor is excited for me and I am staying on it! At first it makes you feel worse but then it stops and you feel better. Took at least two months of ramp time to get to 4mg and to feel like my energy level and life was on stable route.
Re: Low Dose Naltrexone (LDN) — My wife has a primary progressive MS-course for over 19 years now. She takes Naltrexone 1,5 mg/day for already a year. To have the best effect she takes it between 21.00 and 22.00 h. However there is there is no improvement in her condition yet, we keep faith in Naltrexone. For her course there is almost nothing else to try to slow down or stop the process. Jan Korona Belgium
Re: Copaxone — My wife has MS. She used copaxone for more than two years. Side effects are: tissue problems related to the subcutan injection. Although it effectively surpasses the MS symtpoms we are looking for a better alternative.
Re: Fatigue — i'm fatigued everyday. I wake up tired. No matter how much I sleep, its never enough
Re: Legs feel very heavy — Yes my legs often feel very heavy like lead weights actually.
Re: Low Dose Naltrexone (LDN) — My husband has taken nothing but LDN for over 5 years. He has had no disease progression, gets an annual MRI and theres nothing new going on. No side effects and one pill at night means he can get on with his life. He`ll never take any of the "approved" MS drugs - expensive, toxic and with only a 30% chance of improvement, just not good enough odds for us.
cathleen8763 Re: Bladder — would love to know what medication has worked for people.
cathleen8763 Re: Weakness — I often begin to crumple or stoop over (after 30 min or so) if I attempt a task while standing (housework, cooking) a short rest (5-10min) often will allow me to continue/complete the task
Katz Re: Blurred vision — Intermittent and exacerbated by heat and fatigue.
alicot Re: Low Dose Naltrexone (LDN) — no side effects, stopped the progression of my MS at least so far! The doctor was amazed but still won't prescribe it so I use a doc who is also a nauturopath, Daniel Newman in case you need him in Vancourver Washington. I'm in Portland, Oregon
bcb61 Re: Weakness — Often caused by heat (or housework), the feeling of "crumpling over" or being unable to stand correctly. Only rest and cooling down restores normal strength.
catownsley Re: Bladder — controlled with medication
3 nights on LDN and so far, no changes noticed. I am waking up at 3 am - unable to get back to sleep before the 5 am alarm goes off....Im only taking 1.5 mgs at this time, Skip says stay at that level for a month. Is the insomnia going to stop?
LDN: After a failed attempt at Copaxone (allergic reaction) I have been on Rebif for almost 6 years. This year, nothing but problems with site reactions and ongoing pain. I stopped it ten days ago and am axiously awaiting my first shipment of LDN. I only hope and pray that I have the same results that some of you have had! fingers crossed....
Do any of you guys know of any physicians who prescribe LDN in the central Florida area? (orlando, apopka, oviedo, etc.)
Re: Low Dose Naltrexone (LDN) — I have started LDN a few weeks ago. My fatigue has reduced considerably, Bladder issue has almost gone and pain in legs has also been addressed. Only spasicity in right hand and legs still bother me. hope LDN will help me here also.
Re: Fatigue — Can't say what causes it. It could be hot weather, physical exertion or stress. It used to drains me out
Re: Fatigue — I wake up tired and go to bed after tea. I am taking fadafulin but with my other tablet, they are making me more tired
Re: Low Dose Naltrexone (LDN) — Two years ago, I CAUTIOUSLY took myself off traditional MS medication which was one year after starting LDN (Low Dose Naltrexone) to test if I would be able to live without Copaxone. Any little change in my health would cause me to question if I made the right decision. I knew it was a good decision but didn’t have the proof in hand. Last week I requested to have an MRI done. This is the first one since 2008. Success! No changes period. This is NOT what you would typically hear from any MS patient.
So today I am even more determined to help others. Anyone with an auto-immune disease please let me know. I am here to help you.
Adam adamsuranyi@yahoo.com
Re: Low Dose Naltrexone (LDN) — For me it has been almost miraculous. Ten years into treatment (Avonex, etc) I was going downhill and on the verge of giving up my career due to extreme fatigue, body aches, and malaise, plus miserable relapses esp. in summer. The most difficult challenge was finding a doctor who would allow me to try LDN. I had no negative side effects and felt better almost immediately. After 14 mos-it has given me my life back: no relapses even under extreme stress-and much improved vitality. I feel very fortunate to have found this but fear that when my current doctor retires I will lose access to LDN.
Re: Low Dose Naltrexone (LDN) — When I first went on LDN, I had really weird dreams, but they have subsided. I feel wonderful and am grateful for my increased energy level. I was diagnosed five years ago and have never taken any drugs. Thought I would try this first. I have lost 50 pounds, I bike ride and I am active in the summer months, and hope this keeps up. Additionally, my bladder leakage has stopped! The doctors said this was due to having two large babies and didn't think it was related to MS. However, why would it stop after ten years of problems - huh?
Re: Low Dose Naltrexone (LDN) — I have been on LDN for about 9 months now and I am doing well. The bladder problems that I blamed on having kids, has now mysteriously dissappeared.
Re: Numbness — tips of fingers and toes numb
Re: Muscle weakness — weak rt leg and rt arm and rt hand
Re: Poor balance — bouncing off the walls all over the house
Re: Low Dose Naltrexone (LDN) — Lack of sleep the first few nights. No other issues noticed.
Re: Low Dose Naltrexone (LDN) — Felt stronger after first day. Been taking 3.5 mg nightly for one month now and I notice being able to do more every day (had trouble with walking and balance). The symptoms are still evident, but LDN has been a remarkable tool and I continue to believe the crippling effects of my MS will fade away in time. I have not taken any other medication(s) for MS even though they were prescribed to me upon diagnosis. LDN, however, made sense.
Re: Jumping muscles — spasticity in evening when sitting in one position for over hour +
Re: Cognitive dysfunction — use wellbutrin when too much activity directed at me; questions fired at me quickly at work
Re: Gait problems — off balance, use walker for need to get someplace faster, use electric wheelchair for malls and outside long distances
Re: Gait problems — walk with cane for better balance
Re: Optic neuritis (loss of vision) — This also gets better for me if I rest, overexerting myself in the summer brings loss of vision on to me, in addition to loss of mobility- everything shuts down when I'm overheated.
Re: Bladder — I've been on ditropan & flomax, neither has worked, would love to know a medication that did work
I've started acupuncture, hoping it helps
Re: Low Dose Naltrexone (LDN) — The only side effects were related to increased endorphins: more energy, to almost anxious, since I had not felt them in so long.
The LDN not only stopped the progression of my MS, which Copaxone for 9 years did not, but I have actually reversed most of the symptoms brought on by MS, such as brain fog, fatigue, balance issues, numbness in hands and feet. When starting, I was often abed for days at a time.
In the two years since starting LDN, I have traveled to Italy and Slovenia, climbed every monument, had surgery in Mexico and run a full-time business. All of these were not even on the wish list when suffering from MS.
I know that I still have MS (I only have to go off the LDN for a week to remember exactly what it was like), but if I don't have to suffer from the symptoms, it is irrelevant in my life now. It is cheap, safe and works for me and many others.
Re: Low Dose Naltrexone (LDN) — Was on copaxone and tysabri....stopped both of those in 2008 and have been ramped up to 4mg of LDN for last two years. I take it every night. I feel normal again and no issues or further progression. My doctor is excited for me and I am staying on it! At first it makes you feel worse but then it stops and you feel better. Took at least two months of ramp time to get to 4mg and to feel like my energy level and life was on stable route.
Re: Low Dose Naltrexone (LDN) — My wife has a primary progressive MS-course for over 19 years now. She takes Naltrexone 1,5 mg/day for already a year. To have the best effect she takes it between 21.00 and 22.00 h. However there is there is no improvement in her condition yet, we keep faith in Naltrexone. For her course there is almost nothing else to try to slow down or stop the process.
Jan Korona
Belgium
Re: Copaxone — My wife has MS. She used copaxone for more than two years. Side effects are: tissue problems related to the subcutan injection. Although it effectively surpasses the MS symtpoms we are looking for a better alternative.
Re: Fatigue — i'm fatigued everyday. I wake up tired. No matter how much I sleep, its never enough
Re: Legs feel very heavy — Yes my legs often feel very heavy like lead weights actually.
Re: Low Dose Naltrexone (LDN) — My husband has taken nothing but LDN for over 5 years. He has had no disease progression, gets an annual MRI and theres nothing new going on. No side effects and one pill at night means he can get on with his life. He`ll never take any of the "approved" MS drugs - expensive, toxic and with only a 30% chance of improvement, just not good enough odds for us.
cathleen8763
Re: Bladder — would love to know what medication has worked for people.
cathleen8763
Re: Weakness — I often begin to crumple or stoop over (after 30 min or so) if I attempt a task while standing (housework, cooking) a short rest (5-10min) often will allow me to continue/complete the task
Katz
Re: Blurred vision — Intermittent and exacerbated by heat and fatigue.
alicot
Re: Low Dose Naltrexone (LDN) — no side effects, stopped the progression of my MS at least so far! The doctor was amazed but still won't prescribe it so I use a doc who is also a nauturopath, Daniel Newman in case you need him in Vancourver Washington. I'm in Portland, Oregon
bcb61
Re: Weakness — Often caused by heat (or housework), the feeling of "crumpling over" or being unable to stand correctly. Only rest and cooling down restores normal strength.
catownsley
Re: Bladder — controlled with medication
thartjen
Re: Blurred vision — extreme double vision