View Full Version : MS break
Just read in this morning's news the following: "Soy could provide good news for multiple sclerosis sufferers, with research showing a soy-based concentrate improved MS symptoms in animals" "The animals weren't cured but could walk and move with a limp or some weakness, while the animals that received an inert substance couldn't".
The following is from an internet site which I copied and am pasting here.
"A natural substance made from soy appears to have amazing restorative powers when given to animals with a multiple sclerosis (MS)-like disease.
Using an animal model of MS, neurologists at Jefferson Medical College found that giving doses of a substance called Bowmann-Birk Inhibitor Concentrate (BBIC) dramatically improved the animals’ ability to move and walk".
I am going to do some more research on the internet.
Anna
Hi Anna. On the surface that sounds like good news but if you read it closer it says in the first part that a soy based concentrate improved MS symptoms in animals. Later it says that the natural substance appears to have amazing restorative powers when given to animals with an MS (LIKE) disease. So my question would be How close to MS was the disease? Not wanting to rain on your parade here but I have became very skeptical of NEW announcements. AL.
Mike27
01-19-2007, 10:30 AM
As well, MS and ALS are two different animals. (so to speak)
A few years back, there was some hype about a treatment for MS. ( I can't recall what it was at the moment) I was quite excited as I thought it could also be used in ALS. My Neuro explained that the damage done by ALS is quite different than MS, which deflated that balloon in a big hurry.
Truth be told, there is a large number of facilities all over the world working on ALS, so keep the faith!
Al, I totally understand your skepticism. However no information ought to be discounted. I merely choose to take the "logical" approach... whatever makes sense is good sense.
Mike, doctors go by the book. Often, it is best to have their opinion but decide for yourself where it counts most and that is - your life. I am not a doctor (I wish I was!!!!) but the way I understand it, is that MS is caused by an "inflamation" of the spine. Inflamation when used in the medical field usually means "infection".
Why couldn't MS (which is part of the family of Motor Neuron Diseases) be a form of ALS? Why couldn't ALS be an aggravation of MS? Also when a bacteria has entered a human without being eradicated, it progresses through stages. These stages change the biochemistry of the body because the bacteria learns to hide and it becomes increasingly difficult to spot in tests the cause of the illness. Why not apply this theory to ALS?
Everything has an explanation and ALS does too. We just have to find it.
For your information, there has been talk (for a while now) that MS is infectious and is passed on to close family members. However, not all who come in contact develop it.
Did you know that most clinics now treat Fatigue Syndrome with high dose antibiotics? Similarly, did you know that some doctors treat Arthritis with antibiotics??
The important thing is to keep abreast of even the minutest information and give it a chance of proving itself wrong. But... what if it is right??
Some food for thought...
Take Care
Anna
Mike27
01-19-2007, 08:48 PM
Al, I totally understand your skepticism. However no information ought to be discounted. I merely choose to take the "logical" approach... whatever makes sense is good sense.
Mike, doctors go by the book. Often, it is best to have their opinion but decide for yourself where it counts most and that is - your life. I am not a doctor (I wish I was!!!!) but the way I understand it, is that MS is caused by an "inflamation" of the spine. Inflamation when used in the medical field usually means "infection".
Why couldn't MS (which is part of the family of Motor Neuron Diseases) be a form of ALS? Why couldn't ALS be an aggravation of MS? Also when a bacteria has entered a human without being eradicated, it progresses through stages. These stages change the biochemistry of the body because the bacteria learns to hide and it becomes increasingly difficult to spot in tests the cause of the illness. Why not apply this theory to ALS?
Everything has an explanation and ALS does too. We just have to find it.
For your information, there has been talk (for a while now) that MS is infectious and is passed on to close family members. However, not all who come in contact develop it.
Did you know that most clinics now treat Fatigue Syndrome with high dose antibiotics? Similarly, did you know that some doctors treat Arthritis with antibiotics??
The important thing is to keep abreast of even the minutest information and give it a chance of proving itself wrong. But... what if it is right??
Some food for thought...
Take Care
Anna
Hi Anna,
I appreciate your response.
Your right when you say docs go by the book. They also go by years...decades of research and treating us PALS. They go to school for many years to get to where they are so yes! I do put a great deal of faith in what they say.
Having said that, I've been around the block enough to know not to put all my eggs in one basket. I do my own research in addition to what I learn from the docs.
Don't think that my heart doesn't skip a beat when someone cites some possible treatment. Don't think my heart doesn't cry when I find it to be false. I've seen literally dozens of treatments like soy and BBIC...one day one will work!
Back to MS; They are not related.
Read the following sites. The first is from the Center for Neurological Study entitled "ALS, MS, MD-What's the Difference?"
http://www.cnsonline.org/www/archive/ms/ms-04.html
The second is from the National MS Society about ALS.
http://www.nationalmssociety.org/Sourcebook-ALS.asp
If that treatment worksfor MS sufferers, great! If, down the road, they find it works for ALS, fantastic!
In the mean time I'll keep my fingers crossed, my ears to the researchers, my eyes on alternative treatments and my faith in the Good Lord! Not much more I can do than that.
Thanks for raising the topic! It is quite interesting. Keep 'em comin'!!:-D
Hi Mike,
Yes, doctors go by the book but I have to disagree with your claim that they have spent "years of treating PALS"... treating means curing. As far as I know none have yet been cured? What doctors have been doing is "dispensing" medication!
My brother's neurologist gave up on him the day of his diagnosis. He got out of the doctor's cabinet with a prescription and an emptiness in the soul. He stripped him of every hope... I resent that attitude and I do not call this good doctoring. The battle for him was lost before it began!!
It is not in the lab that most discoveries were made. Similarly, I think that it is us PALS and their carers alike that contribute their experiments, their thoughts, their symptoms, their findings and their research on this forum that will eventually crack the answer.
Morale is important. Faith gives us hope and hope gives us tomorrow.
You said it "I'll keep my fingers crossed, my ears to the researchers, my eyes on alternative treatments and my faith in the Good Lord!" That is the spirit.
Anna
Hi Anna. I'm sorry you thought I was discounting your story. Far from it. What I do is take such "new" findings with a grain of salt. A few years ago a company in Alberta had a big "breakthrough" in diabetes. I thought great and invested in stock in the company thinking oh boy they're going to cure my son and I'm going to make some money. The $ 1.35 stock is now worth 15 cents and they are no closer to a cure. So I am a skeptic not a discounter.
AL.
Al, I was merely making a statement. I did not mean for you to take it personally. However, your story of investment in the diabetes cure is typical of many that we have seen in other fields as well. It is common knowledge that this is one way to collect lots of money - list a company on the stock exchange!
No one says that we have to take things at face value. Research the findings, research the research... and come to your own conclusions. I encourage all of you to do this. Keep your research up. Ask your doctors to experiment in things you believe to be of benefit to your health. I Know most PALS want to know what comes next where their symptoms are concerned... rather than live in fear, face it and use it to your own advantage. Try not to let anything demoralise you (easier said than done), when you feel good, say it LOUD "I feel good today!" Chances are, you will feel good tomorrow too. The power of the mind should not be underestimated. I will post a true story in another thread to show you how powerful the mind is.
It takes months for the benefits of a health diet to be felt. Nothing is instant. Consistency, persistence, faith and intelligence in the choices one makes for their health is of utmost importance here.
Oh Al, just like all of you, I want a cure for ALS. We can do it. We just have to concentrate and look for it.
Anna
One day, a research scientist wanted to investigate the level of tolerance a human body has to sub-zero temperatures. He found a suitable "cool room" in a meat factory which the owners cleared for his purpose.
Dressed in his heavy coat, gloves, a warm hat, boots and notebook in hand, he entered the room and asked to be locked in and not to be let out until the next day.
Left alone, he noticed how cold the room was. He noted it in his book. He sat down and felt his fingers getting cold. He noted "I am beginning to feel the cold". He got up and performed some warming exercises... He felt his body getting colder. He measured his body temperature and found that it was dropping. He noted in the book "My body temperature is lowering and I am beginning to freeze."
He kept noting his body's various changes and reactions to the icy cold room through the night.
The next day, the workmen arrived and unlocked the door. They found the scientist dead. He died of cold. They couldn't understand how. They forgot to switch the freezer on.
Anna
CindyM
01-20-2007, 08:35 AM
I like this thread. A lively and spirited discussion is just what we need to brighten a cold winter morning. Thanks for all your ideas and opinions. Keep them coming! Cindy
Ok Anna. I know it's not funny and maybe I have a sick (black) sense of humor but I laffed my butt off at that story. AL.
ALS, Parkinson Disease-Dementia are what the Chamorro people in Guam suffered from in the epidemic of the 1950s after World War II.
I am pasting a couple of sites here for you to read. I warn you the Parkinson Disease site is lengthy but makes very interesting reading (similar theory to what I have been sharing here with you).
At least I know I have company. I am not the only one that thinks that ALS is caused by something that was either ingested, stepped on, handled, etc... which would explain why some symptoms begin in the legs, others in the arms and others in the mouth.
http://www.parkinson.org/site/pp.asp?c=9dJFJLPwB&b=99904
http://www.nwabr.org/studentbiotech/winners/studentwork/2004/EM_GA_Chan/history.html
Take Care,
Anna
Yes, I can see why you laughed. I hope you did not miss the meaning of the story though. :-|
Anna
"Return of the cycad hypothesis - does the amyotrophic lateral sclerosis/parkinsonism dementia complex (ALS/PDC) of Guam have new implications for global health?"
Here is a site with some information on the subject.
http://cat.inist.fr/?aModele=afficheN&cpsidt=16947435
A.
For your information...
Med Hypotheses. 2006 Aug 4;: 16890380
Sporadic amyotrophic lateral sclerosis as an infectious disease: A possible role of cyanobacteria?
Giuseppe Stipa , Rosanna Taiuti , Giuseppe de Scisciolo , Graziano Arnetoli , Mario R Tredici , Natascia Biondi , Laura Barsanti , Francesco Lolli
The available epidemiological data for amyotrophic lateral sclerosis (ALS) support an infectious etiology and lead us to propose a new hypotheses. We examined older epidemiological data concerning categories of the population with increased incidence (aged people, people living in rural areas, farmers, breeders), more recent epidemiological reports regarding Italian soccer players, AIDS patients, people living in highly polluted areas, and reports of cases of conjugal and pregnancy-associated ALS. The toxic and infectious hypotheses lead us to suggest a role for cyanobacteria in the production of endogenous beta-N-methylamino-l-alanine. Infection from a cyanobacterium, or another ubiquitous bacterium having similar characteristics, may be the missing clue to the etiology of ALS. We speculate that ubiquitous bacteria secreting toxic amino acids and "colonizing" tissues and organs in the human body might be the common element linking motor neuron diseases in Guam to sporadic ALS in the rest of the world.
A.
Hi everyone on the thread; I've read all the posts here and find them very interesting; now to my point, do any of you know of anyone handling pesticides sick with ALS; I am blaming pesticides for my husband getting sick, he applied pesticides for twenty three yrs. as a Duster pilot, this was done in Mexico, were pesticides that were not permitted in the States, were used here; although none of the Neurologist who saw him though this had anything to do with ALS.
On Aug. 4th, 1980, on a very hot day more than 120 degrees, around two o'clock in the afternoon, one of the hoses broke he aspired the pesticide lost consciousness and his plane fell down, thank God it didn't get on fire and people working for him on ground took him out from the plane rapidly and was taken to the hospital, at that time he only had a finger and two broken ribs beside the aspiring of the pesticide; his body hurt all over, (COMPREHENSIBLE), the plane was left unusable, (IF YOU COULD SEE A PICTURE, YOU WOULD SAY, HOW DID THIS MAN SURVIVED).
I still think it was his exposure to pesticides that got him sick, since he kept on flying for yrs. after that experience. He started having symptoms on June 2005, was Dx on October same yr. and right now cannot move, still eats but it takes him 90 minutes to do so, wouldn't go for a PEG, we can barely understand what he speaks, he's was an arms onset; by the way he had stopped flying as a duster pilot on 2002 and was opening a Commercial Flying School, when he suddenly started showing weird symptoms, since I had my son's medical books from the Medicine Faculty (he's a doctor). I started looking for a term to apply to the weird movements I was seeing on his back. (Fasciculations and got to the MND, ALS) tests were done, us praying for a different diagnostic, the Neurologist who gave the Dx was one of my son's teachers at the Medicine Faculty.
He could still walk with help on January 2006.
Thank you all for reading such a long post.
Sincerely,
CAN ANY ONE TELL ME IF THEY THINK I AM RIGHT????
I WOULD APPRECIATE IT A LOT.
SINCERELY,
Paty
Baja California, Mexico
There is quite a bit of research (for ALS research) being done on environmental toxins. I think myself that it is possible that the pesticides caused your husbands ALS as I am convinced that Firefighting caused mine and another member of my department's.
AL. Check your private messages Paty.
I just checked my private messages, left one for you at that GrampAL 2 thread.
Sincerely,
Paty
I will go now to give my husband his cigarrette, will come back as soon as he finishes, to keep on reading the posts.
Hi Paty,
No one as yet knows what actually causes ALS. However, there are many theories as to the possibilities and amongst others, the exposure to pesticides.
I have copied a paragraph from the website of the ALS Association www.alsa.org/research, wich I am pasting below:
"Exercise or Pesticides
One idea that researchers offer is that soldiers on active duty are engaged in strenuous physical labor. Or, they are exposed to toxins which could play a role in ALS. ALSA is helping to fund an effort by the Veterans Administration to collect information about veterans diagnosed with ALS, to shed light on possible environmental factors associated with the disease. This VA registry will also serve as a stepping stone to clinical trials. Both possibilities, of toxin exposure or the influence of intense exertion, are advanced when researchers consider the finding that Italian soccer players appear to have increased incidence of ALS. It remains unclear whether exercise is indeed a risk factor and what types of exercise may be of concern. Indeed some studies seem to suggest that a degree of exertion may be beneficial in ALS. Other ideas are that pesticides or some other chemical encountered on maintained playing fields might be involved."
My brother who was diagnosed in 2003 does not seem to remember being exposed to chemicals or pesticides - but who knows for sure.
All the best,
Anna
Thank you Anna, for taking the time to answer my post and for the link; I will go to read it.
Sincerely,
Paty
B.C., Mexico
Husband's Caregiver
