Steve100
Distinguished member
- Joined
- Oct 5, 2007
- Messages
- 164
- Reason
- CALS
- Diagnosis
- 10/2007
- Country
- UK
- State
- Wales
- City
- Cardiff
Hi all, hope you're all feeling ok. My Mother was diagnosed as having MND today (or they're 98% sure at least) and although we suspected it for some months, it's still a horrible shock. The doctor said that a scan on her brain showed no abnormalities, but I thought MND didn't manifest itself in the brain anyway. Can anyone advise me on this?
She has gone downhill quite rapidly the last 6 months or so. She can stand up and walk with help but not much more - is she likely to worsen at the same rate or is there the possibility of periods of her symptoms stabilising?
I looked up alternative treaments on the net and came across the article below. Has anyone tried these and if so were they any good? If you haven't seen these then I hope they can help you
I'm sure this has been discussed many times before but if someone could just go over it again for me I would be grateful.
Thank you
This is the article............
Do you have any alternative treatments for motor neuron disease? E B, Glasgow..........
Motor neuron disease, also known as amyotrophic lateral sclerosis (ALS), is the puzzling autoimmune disease which afflicts cosmologist Stephen Hawking. It affects motor neurons, the nerves that supply the muscles, resulting in a breakdown of these nerves at their source the brain and spinal cord. Its symptoms include a progressive wasting of the muscles of the hands, forearms and legs, although it can spread to most of the body.
The common assumption in medicine, which has no effective treatment, is that you'll be dead within one to five years (Palliative Med, 1998; 12: 113-5). (Clearly then, Dr Hawking, who developed this disease in his student days, has long outlived these odds.) Doctors believe all they can offer are strong opioids, in the terminal stages of MND, to relieve the pain.
That doctors shrug their shoulders when confronted with MND is outrageous, considering that solid scientific evidence about the role of diet, supplements and environment in the development or treatment of this disease has been available for 50 years.
The first step, according to WDDTY panel member Dr Melvyn Werbach, is to determine whether you have any heavy metal toxicity. Although there have been no double blind trials, several observational studies have shown a link between the incidence of motor neuron disease and heavy metal toxicity, particularly mercury and aluminium. One study found a correlation between British counties with the highest levels of aluminium in the water and the highest mortality from MND, particularly among women (Lancet, 1989; i: 267-8). Two decades earlier, a Japanese study noted a 100 fold increased prevalence of MND, when high levels of manganese and aluminium and low levels of calcium and magnesium were detected in soil and water samples (Lancet, 1972; ii: 292-6). Furthermore, mercury in amalgam fillings appears to play a role in all "sclerosing" diseases like MND. The dentist of one Swedish patient with MND suspected mercury poisoning and convinced her to have her copious amalgam fillings replaced. Five months later, the hospital which originally diagnosed her MND noted that she no longer had any sign of the disease (Int J Risk Safety Med, 1994; 4: 229-36).
Examine your diet. Patients with MND are often malnourished (J Am Coll Nutr, 1991; 10: 548). A number of observational studies link calcium deficiency to MND. Some researchers postulate that calcium and magnesium deficiencies can lead to abnormal mineral metabolism and deposits of calcium and aluminium in the neurons (Neurology, 1985; 35: 193-8).
Patients given vitamin B6 intravenously improve (JAMA, 1940; 115: 292-7), as do patients give B12 intramuscularly ( N Engl J Med, 1988; 318: 1720-8). Vitamin E, known to protect neuronal tissue from free radical damage, has helped MND victims. Vitamin E appears to work even better when "enhanced" with thiamine (Med Rec, 1941; 154: 97-100).
Patients with MND also seem to metabolise certain amino acids abnormally. Supplementing with 3 g of L-leucine, 2 g L-isoleucine or 1.6 g L-valine four times a day helped maintain the motor ability of nine patients to the extent that only one lost the ability to walk (Lancet, 1988; i: 1015-8). Coenzyme Q10 plus B vitamins enabled one MND patient to improve to the point where he was able to walk eight miles with just a slight limp (Int Clin Nutr Rev, 1989; 9: 62-3).
A final avenue to explore is gluten intolerance, which has been linked to brain abnormalities (Neurology, 1980; 30: 245-9
She has gone downhill quite rapidly the last 6 months or so. She can stand up and walk with help but not much more - is she likely to worsen at the same rate or is there the possibility of periods of her symptoms stabilising?
I looked up alternative treaments on the net and came across the article below. Has anyone tried these and if so were they any good? If you haven't seen these then I hope they can help you
I'm sure this has been discussed many times before but if someone could just go over it again for me I would be grateful.
Thank you
This is the article............
Do you have any alternative treatments for motor neuron disease? E B, Glasgow..........
Motor neuron disease, also known as amyotrophic lateral sclerosis (ALS), is the puzzling autoimmune disease which afflicts cosmologist Stephen Hawking. It affects motor neurons, the nerves that supply the muscles, resulting in a breakdown of these nerves at their source the brain and spinal cord. Its symptoms include a progressive wasting of the muscles of the hands, forearms and legs, although it can spread to most of the body.
The common assumption in medicine, which has no effective treatment, is that you'll be dead within one to five years (Palliative Med, 1998; 12: 113-5). (Clearly then, Dr Hawking, who developed this disease in his student days, has long outlived these odds.) Doctors believe all they can offer are strong opioids, in the terminal stages of MND, to relieve the pain.
That doctors shrug their shoulders when confronted with MND is outrageous, considering that solid scientific evidence about the role of diet, supplements and environment in the development or treatment of this disease has been available for 50 years.
The first step, according to WDDTY panel member Dr Melvyn Werbach, is to determine whether you have any heavy metal toxicity. Although there have been no double blind trials, several observational studies have shown a link between the incidence of motor neuron disease and heavy metal toxicity, particularly mercury and aluminium. One study found a correlation between British counties with the highest levels of aluminium in the water and the highest mortality from MND, particularly among women (Lancet, 1989; i: 267-8). Two decades earlier, a Japanese study noted a 100 fold increased prevalence of MND, when high levels of manganese and aluminium and low levels of calcium and magnesium were detected in soil and water samples (Lancet, 1972; ii: 292-6). Furthermore, mercury in amalgam fillings appears to play a role in all "sclerosing" diseases like MND. The dentist of one Swedish patient with MND suspected mercury poisoning and convinced her to have her copious amalgam fillings replaced. Five months later, the hospital which originally diagnosed her MND noted that she no longer had any sign of the disease (Int J Risk Safety Med, 1994; 4: 229-36).
Examine your diet. Patients with MND are often malnourished (J Am Coll Nutr, 1991; 10: 548). A number of observational studies link calcium deficiency to MND. Some researchers postulate that calcium and magnesium deficiencies can lead to abnormal mineral metabolism and deposits of calcium and aluminium in the neurons (Neurology, 1985; 35: 193-8).
Patients given vitamin B6 intravenously improve (JAMA, 1940; 115: 292-7), as do patients give B12 intramuscularly ( N Engl J Med, 1988; 318: 1720-8). Vitamin E, known to protect neuronal tissue from free radical damage, has helped MND victims. Vitamin E appears to work even better when "enhanced" with thiamine (Med Rec, 1941; 154: 97-100).
Patients with MND also seem to metabolise certain amino acids abnormally. Supplementing with 3 g of L-leucine, 2 g L-isoleucine or 1.6 g L-valine four times a day helped maintain the motor ability of nine patients to the extent that only one lost the ability to walk (Lancet, 1988; i: 1015-8). Coenzyme Q10 plus B vitamins enabled one MND patient to improve to the point where he was able to walk eight miles with just a slight limp (Int Clin Nutr Rev, 1989; 9: 62-3).
A final avenue to explore is gluten intolerance, which has been linked to brain abnormalities (Neurology, 1980; 30: 245-9
