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Steve100

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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
 

hboyajian

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Steve, the brain scan was most likely done to rule out other reasons (such a brain tumor) for the symptoms your mother is experiencing. Part of the process of arriving at a diagnosis of MND/ALS involves eliminating other possibilities.
Regarding the article about alternative treatments, I think it can only be helpful to anyone to improve their nutrition, but I would not count on a miraculous recovery or even slowing of progression. Though the latter could happen for your mom, there is little known about why some people experience faster decline and others have a slower progression and some also appear to plateau for a time. I don't know if any valid scientific studies have been done regarding nutritional supplements as a treatment. If they are not exorbitantly expensive (ie. vitamin pills, calcium, and protein drinks) it seems like a good thing to do anyway. There are unsubstantiated claims out there regarding expensive, useless products (such as glyconutrients) that you should avoid.
I would like to see comprehensive studies about pollutants, pesticides, and heavy metal contamination regarding the incidence of ALS and other illnesses. I think the dental amalgam issue has not shown correlation to higher incidence of MND.
 

Steve100

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Thanks for your reply - anything is worth a try I guess, as long as you don't build your hopes up too much.
 

John1

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Steve,

I have a couple of thoughts. This month marks my seventh year since diagnosis. I started a regimen of anti-oxidants and vitamins nearly immediately. I don't know whether this has helped slow my progression or not but I'm sure not stopping in case they have. One thing I'm sure of is that my colds have stopped. I used to get 2-4 head and chest colds yearly without fail. I have had none since I started my vitamins. As you may know, many PALS die of pneumonia so if you can stop colds, you may stop them turning into pneumonia.

Otherwise technology offers to most relief for PALS today. Things that make life easier and more accessible are a godsend. Scooters and wheelchairs, wide doorways, ramps, roll-in showers, bidets, sliding bathroom doors, wheelchair vans all serve to preserve independence.

Technology also helps healthwise. From bi-paps to portable vents, pegs for feeding and diaphragm stimulators all may extend life and comfort. I think that the last one is currently the most promising emerging technology for PALS.

John
 

Steve100

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Hi John, thanks for the advice. Any particular anti-oxidants/vitamins, and what sort of quantities? I really am very new to this. Thanks.
 

John1

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Hi John, thanks for the advice. Any particular anti-oxidants/vitamins, and what sort of quantities? I really am very new to this. Thanks.
Steve,

I don't want to suggest that what I am taking is any kind of a prescription for MND. Essentially I've added things to my regimen (and sometimes taken them off) on the basis of reports I've read including some ALS mouse trials. Basically it's a mix of vitamins and anti-oxidants. Vitamin C, besides being an anti-oxidant, has been touted by many including Linus Pauling as a cold preventative. Vitamin E is a pwerful anti-oxidant and a very large multi-disciplinary study found that people who had taken Vitamin E regularly for an extended period had a much lower incidence of ALS - 60% lower sticks in my mind. Of course they took it BEFORE getting the disease and it may have no protective qualities afterwards. Vitamin D, in addition to recent suggestions that it may deter the onset of cancer, is present in reduced levels in PALS. Anti-oxidants are regarded as neuroprotective. Here's a link to a page which summarizes much of my thinking on vitamins:

http://www.alsa-stl.org/view_story.php?id=574

I may add Vitamin B12 to my regimen which presently includes:

A One-a-day multivitamin
1500 mg Vitamin C
2x400 IU of Vitamin E (natural source)
2x400 IU of Vitamin D
100 mg grape seed extract (anti-oxidant)
50 mg Pycnogenol (anti-oxidant)
2x400 mg CoQ10 (anti-oxidant)

John
 

Steve100

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Thanks - I'll see if I can find these - especially the Q10, I've seen that mentioned a lot.
 

Steve100

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We're seeing the neurologist again tomorrow and I just wanted to clear something up. If you test positive for babinski, hoffman, or clonus, does that you mean you have MND? I've read that they are used to diagnose MND on one website and MS on another. Can you help?

Thanks once again

Steve
 

trying to stay positive

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Hi. My husband takes the B12. I am told my a nutritionist that B12 is not readily absorbed by the body when taken in pill form. Shots are best, with sublingual tablets (tablets that dissolve when placed under the tongue) coming in as a very good alternative.
 

jean

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Hi steve
Having a postive babinski is not diagnostic of MND. It means there is an Upper motor neuron problem , which can occur in quite a few diseases. However, because ALS has an upper motor neuron component involved , the babinski is positive and is a sign that is looked for when diagnosing the disease.
Hope that helps
Jean
 

jean

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Forgot to say that clonus is also another upper motor neuron sign and again not specific for MND .
 

Steve100

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Thanks Jean and Linda. You've been a great help :)
 

Steve100

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I asked the neurologist about some alternatives to ALS, including MMN. He said that with MMN he would expect a CK level in the thousands, while my mother's was around 200. I just read a post here and someone with ALS had CK levels in the thousands.....is the neurologist correct or should I pursue this further?

Thanks

Steve
 

Steve100

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Peg B

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Hi Steve,

I looked up CK and did not understand what it was. A blood thing? I do not have any problems in my blood and I have the MMN or Atypical ALS (really slow). So I don't know. Maybe if you explained what CK is others could respond. Just a suggestion. Peg
 
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