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View Full Version : Advice Please


Steve100
10-05-2007, 05:16 PM
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
10-06-2007, 10:45 AM
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
10-08-2007, 05:52 AM
Thanks for your reply - anything is worth a try I guess, as long as you don't build your hopes up too much.

John1
10-08-2007, 10:14 AM
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
10-08-2007, 12:37 PM
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
10-09-2007, 12:29 PM
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
10-09-2007, 07:43 PM
Thanks - I'll see if I can find these - especially the Q10, I've seen that mentioned a lot.

Steve100
11-12-2007, 05:18 PM
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
11-12-2007, 07:53 PM
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
11-12-2007, 08:01 PM
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
11-12-2007, 08:09 PM
Forgot to say that clonus is also another upper motor neuron sign and again not specific for MND .

Steve100
11-13-2007, 06:00 PM
Thanks Jean and Linda. You've been a great help :)

Steve100
11-14-2007, 07:58 PM
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
11-16-2007, 05:38 PM
Anybody? :(

Peg B
11-16-2007, 07:27 PM
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

pmbenb83
11-16-2007, 09:41 PM
Hi Peg and Steve,
CK is creatine kinase. My husband's doctor watches his CPK, which is creatine phosphokinase... muscle breaking down and passing in the blood.

Creatine kinase (CK), also known as phosphocreatine kinase or creatine phosphokinase (CPK).


Pam B in Va

Steve100
11-17-2007, 07:51 PM
Thanks for trying Peg :)

Pam - thanks for the info :) - can you tell me if a low count is likely to mean ALS?

Thanks

Steve

Steve100
11-19-2007, 04:45 PM
Can anyone answer this?:D

Al
11-19-2007, 05:13 PM
Hi Steve. I was told that 200 is average for a man my size and age. Mine was 1100 last check. That means that I am losing muscle. The doc told me that 1700 is not uncommon in ALS. Any higher than that he would start looking for the reason.
AL

Steve100
11-19-2007, 06:01 PM
Hi Al - thanks for the reply. Its weird that my Mother's level was around 200. The neurologist said that that ruled out MMN but didn't mention it was not typical of als either. I had to ask him to do a test for Lymes, which he did finally agree to do, and he's also going to do a bone scan, which I think he should have done before. In an ideal world it would turn out that her spine is pinching a nerve and causing atrophy and weakness. Unfortunately she's having trouble swallowing and talking, so I dont hold out much hope that the diagnosis will change, but it can't hurt to check :).

crystalkk
11-19-2007, 08:27 PM
Hi steve,
MMN just involves just the lower motor nuerons, Not the upper which are
hyper- reflexes, clonus, babinski, etc.
Why is he suggesting a bone scan?

Steve100
11-19-2007, 08:40 PM
Hi Crystalkk

My Mother has arthritis and is in terrible pain that not even 30mg morphine will fix properly (though it has taken the edge off I think) I'm not sure what he thinks he will find in the scan, I was just glad that he was doing something. :D I asked him about babinski but I'm not sure he did the test - he just mentioned that speech being affected is a sign of upper motor neuron involvement. Thanks for asking. :)

pmbenb83
11-19-2007, 09:11 PM
Hi Steve,
My husband's CPK level has been in the 800 range. I read on one website that the normal range for CPK is 5-200, so 200 sounds like it is in the normal range. Good luck with the bone. Please let us know how you and your mother are doing.

Take care.
Pam B in Va

Steve100
11-21-2007, 08:05 PM
Hi Pam, hope you are doing well

My Mother's not doing so well at the moment, she's more or less confined to a wheelchair (she can take a few steps if she's supported) and is having more trouble swallowing. I noticed something odd the other day though.........She was writing and although the words slope downwards a bit (due to the weakness). the letters themselves are pretty well formed and perfectly legible. Surely her fine motor skills would be the first to go in MND? Any thoughts on this?

Thanks

Steve

Rachel
11-23-2007, 06:17 PM
Hi Steve

I think the loss of fine motor skills varies from individual to individual. My mum retained the ability to write neatly & legibly up to the last few days. While she was in the hospice she even painted a name plate and bookmark very beautifully with water colour pencils. The occ therapist commented on how steady her hands were and how much control she had.

Take care

Rachel

Steve100
11-23-2007, 06:59 PM
Hi Rachel

Thanks for the info, its such a pity - hope you're doing ok, I know yesterday must have been hard to get through.

Take care

Steve

patricia1
11-23-2007, 08:32 PM
Hi I have Als and my cpk is 200 andd its been like that for years Pat1

Steve100
11-24-2007, 05:49 PM
Hi Pat, thanks for letting me know. Maybe it's not such a definitive test? The results seem to vary a lot.

Steve

Steve100
12-13-2007, 06:48 PM
Good luck with the bone. Please let us know how you and your mother are doing.

Take care.
Pam B in Va[/QUOTE]

Hi

The appointment for the bone scan finally came through for tomorrow, but we've had to cancel it. My Mother is in too much pain to be pulled around in hospital again. You have to wait four hours after the injection so its just not feasible. She's had enough I think.

Take Care

Steve


    
   
   
   
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