THAT is not farfetched. In fact, because I set out mouse poison in the shape of bars in my crawl spaces, the attic, the cellar, I was thinking that maybe the culprit of my illness. I brought it up to my neuro who didn't really bat an eye at it, but did a blood test called cholinsterase. I didn't get a clear answer, but was left with the impression that was to check for poisoning. You've got the right idea, keep thinking, thinking, thinking and advocating. I hope you are feeling okay yourself.
I'm thinking out loud today.. looking for some feedback opinions...My question is for the doctors and why aren't they taking hair samples for long term exposure to toxins on initial exam along with all the other testing? I know this testing is very expensive, BUT wouldn't this give a better timeline as to exposures and clarity of levels- not to mention other compounds? . With this information a national database could be created to record the high levels and hence show products/environments which contain them. We certaintly have the technology.
The majority of testing for toxins only seems to be- urine for heavy metals ( lead etc) and blood for arsenic and ( mercury) that's the only tests ordered by the neuros we've seen along with systemic usual labs ( ie, Igm, CPK, Lfts, Creat,. etc.)
My fiancee was also exposed to several compounds for many many years with work
( fuel,asbestos, lead), gardening ( bee and ant control- back in the DDT days! ) ,God knows what the pesticides on the pot of the 1960s was! and years of maintaining the pool/outdoor spa. ( always choosing to use his hands without gloves! ). Recently diagnosed with MMD. ( which kind - still awaiting the verdict- by the experts- not a year yet... so the wait continues)
I truly believe, , long term exposure to different specific compounds,( mix that with daily physical/emotional stress) over years has to have an effect on the neuro systems of our bodies. Just how and what- is anyone's guess. I can't believe amalgam fillings are the culprit, for a larger population would have higher levels of mercury- and from my reading, the numbers just aren't there.. I think diet and environment would have more impact. ( years of eating seafood, unsafe soil used to grow veggies etc- hell even toothpaste! )
What if specific toxins, in combination, over a long time period, could be a contributor to developing this disease. If so, what would be the remedy. Our bodies are huge filtering systems- something must have been disrupted to have jump started this insidious disease. I think there are many schools of thought on the subject out there, immuno-responsive vs systemic origin. The more I read, the less I know!
Just thinking outloud here folks... like everyone else...asking a million questions for some answer.
It's so very frustrating. and soooooooooooo very unfair as I am sure all here can relate. Thanks for letting my fingers- release the impotent rage I feel- with the inner questions constantly barraging me.
Yes an OFF switch would be great! And I hope to God that switch is found soon!
Sorry you had to find us. How is your fiancee?
There are a lot of theories about the role of toxins in ALS, but nothing conclusive as you have probably found. Just beware of those touting detoxification regimens with expensive herbs, vitamins, etc... These have been tried by many PALS and only served to empty their pockets of much needed cash. Of course eating healthy and supplementing diet with multi-vitamin/mineral complex can't hurt.
Head spinning is allowed here, as there isn't a better place to vent. Now...if we could only exorcise the disease from one's body!
Thanks for writing back.. He is stable at the moment. ( not sure if it's the Rizule, CQ10 or quinine that's working) BUT To look at him, you would never think anything was wrong. To sleep with him.. well that's another story. His body is changing before my eyes. His initial symptoms was nothing more than cramps ( we chalked it up to his past smoking).. than fasiculations, and only lower involvement ( foot drop). I was hoping for a blown disc. He was fortunately ( or unfortunately- depending on how one looks at it) seen by a very good neurologist, who quickly did testing.. and immediately sent him to an ALS center in New York.
They are still in the testing phases. Although, they did say it was a MND which kind, they can't say.. It's my understanding that a true diagnosed can't be made prior to a full year of observations/documentation of progressive symptoms and not before ruling out any and all everything else. So the wait continues. At this point I really don't want to know. I am living life as anyone should. CArpe Diem ! No one is promised tomorrow. I work in a trauma center and see that daily. Wake up healthy... bam a Mack truck changes that in an instant. Sooooo to make a long story short. Tomm he goes back for a new weird test that sends some magnetic wave through him ( NOT an MRI or EMGS) to see the response. TRI- something...it's called. The EMGs/NCS's showed severe denervation haven't heard back on the last one.. he has had two so far.
The big sit down appt. is at the end of the month. Not looking forward to it. I can see the change, so can my fiancee.. It's the silent ELEPHANT in the room at the moment, we are currently living with, but walk around it in our daily life. I'm hoping it stays quiet. No new symptoms that is.
So that's it in a nut shell, thanks for asking. It's good to share ones inner thoughts on line with others that understand. How did this disease occur for you/yours?
Lougirl, I will be thinking of you come the end of the month. The "big appointment" is not easy. It was about a year ago when my mom called me and said the Physiatrist had asked that all nearby family members come to the next appointment, when she would have all the test results in on my dad and interpret them for us. She said her initial thoughts after the initial examination were that we were looking potentially at a diagnosis of ALS. Even then, she was going to refer Dad to an ALS specialist to get confirmation of the diagnosis. I held onto every shred of hope I could find until then, which is only natural, while learning as much as possible about the potential disease. That big appointment was still a bombshell for our emotions.
You have been doing so much to help your fiancee keep as healthy as possible through nutrition and medications that could help. Maybe a year of going through all the observations and testing, as you have, gives more time to prepare your mind and heart (for us it was a few weeks), but I think there is nothing that can really make it any easier except the caring of friends and family around you. I hope for both your sakes that the diagnosis is a less aggressive MND (or hope against hope something else more treatable) and that the progression is slow.
About the arsenic...I live in an area that was in the plume of smoke from a now defunct copper smelter for more that 70 years. There is both arsenic and lead in the soils here, varying amounts ( some up to 8 times the recommended maximum residential levels) depending on the wind patterns, topography and vegetation of various properties. If arsenic is a potential cause of motor neuron diseases, the incidence should be much higher for the population here. I don't personally know anyone in my town who has ALS, but perhaps I just don't know about them. The National Registry for ALS ( if it is created) could begin to build a database for which to monitor areas of higher incidence and life conditions including exposure to various toxic substances that cause higher incidence, and perhaps find connections that we aren't even thinking about.
Sorry about my English writing, but not my first language.
It was suggested in October last year that I had ALS, since then it has been confirmed.
As I guess many others would do, I was trying to see if it could be something else, like mercury poisoning etc.
I did found on www.youtube.com about mercury effect on neurons, for this reason I asked my Doctor at the Danish main hospital if I could be tested for toxic in my body?
The following is not a joke, it did happen to me:
I was asked to visit another hospital and a specialist meet me there, he noticed I had difficulties breathing, asked me to sit down and then I should point my five fingers up-wards, he took a a sheet of paper (letterhead) and place it on the fingers, after looking on it for about 20 seconds, he declared that I did not have any toxic/heavy metals in my body.
He then made some simple reflex test, and the ending remarks was word to this effect: You are good hands with the other hospital, go home and enjoy what you have left of your life.
And he call himself a Doctor, and some of those are our lives in the hands of?
Person like me (and surely you will be the same) could not accept this kind of rubbish, I therefore went to a private clinic, to get a full test for heavy metals. I got a pre and post test of my urine using D-pencillum as the agent.
About two weeks later I got a phone call, and the Doctors said, you have some mercury and lead actually too much, but the biggest problem is: Arsenic.
Where it came from I don't know?
I started to read about the effect of arsenic and now understand why it would be very difficult for a doctor to see the difference between ALS and arsenic.
Over the last two months taken D-pencillium and EDTA to remove the toxic, but my ALS is not getting better.
I have forced myself out of my comfortable life as the CEO and now do manual work, in the hope to keep the body going longer.
I still walk and write but my speech is really bad and it has changed from not so good to bad in about 30 days.
However, I have managed to get my breathing to be beather at least for the present.
So can arsenic course ALS? In my view it can, there most be something that start the sickness and I suggest it can be many differnt items such as arsenic, mercury etc.
The facts is; billions of other people does not have ALS, therefore something has started it in the body.
(When I was young student I argued with my teachers the view that I could not accept that brain cells and nerves could not grow back, now many years later it is now been proved they can) which takes me to the next item:
Recently used about 6 months research about arsenic, mercury, lead and ALS, and came to the conclusion that the only treatments that may really work, are based on not only doing one thing but consider many things at the same time: Stem Cells, Massage, Herbal medication, Oxygen.
As the brain is the largest user of oxygen about 20 %, I suggest that is not possible to restore health in the brain without extra supply of oxygen, as the lungs get affected either by the arsenic or ALS.
About 1 hour each day, which I do hope I can get into a pressure chamber and get the oxygen there over a perid of 30 days.
If a person like me has both problems, then the Kidneys, Liver, Spleen and intestine will be effected.
For this reason I have investigated those problems and I will now start to take a herbal treatment that I found in China (no animals used) to restore or get those to work better.
I also take Q10, Fish oil, B supplement and shortly will take Noni juice, which I did use in Vanuatu, when I lived there. ( I should properly have taken it more often?)
Massage I think is a most, to help against muscle spasm etc.
Stem cells, I was under the view that those was always taken from abortion, but have ever been wrong, today only a few use those ( I would not) the most common they take your own fluid from either the hip bone or spine, remove all the blood part and refine until they have the few "building blocks" stem cells that is needed, then multiply those in the millions and those go back to your own body.
Personally, I think this is the most logical way to treat neurons that has been damaged, and properly the way I will go if/when I can get the finance to do it.
There are some clinics in China, Germany, Spain
I am not a doctor, but have worked a little bit with herbal medicine and trained doctors and pharmacies in those. Please note: The above is just my private view.
However, I trust one can fight ALS, but it may require some doctors to look outside the square. It is not many years ago, (about 30 years) that some doctors got pretty upset when they heard one was taken vitamins and minerals, today one get told off if not taken those.
If some of you like to write to me directly I will pleased to get any letters, my address is [email protected]
To all of you like me that has ALS, please do not give up, keep fighting, stay calm and positive, cry when you need to and laugh as much you can. Show love to others and maybe give some more hugs to all your friends, you will need some back.
Share your postive experience with us all.
If I can find the the money for the stem cell treatment I will surely keep you posted.
Sorry to say that there has been no REAL proof that removing toxins? and heavy metals from your body will slow progression or help with the symptoms of it. People who tell you otherwise are going to make money from you one way or the other. They are just crooks in nice suits without a mask and a gun.
Yes, one has to very careful about what you are told.
But I think one will find there are plenty of evidence that D-Pencillium does work to remove heavy metals, and if one study the structure of this medication will notice that it has an open molecule structure where the (heavy metals) can attach themselves to and be remove with urine, but do watch the kidneys.
In my personal case there was such a difference in pre and post D-Pencillium it was quite outstanding.
The way I got the test done was: I made here in Denmark but got it send to the USA, thereby no one knew what I was looking for.
Arsenic affect the lungs really badly, I sounded like steam engine whistle every night so my wife could not sleep near me, some night I went to hospitals and the gave me oxygen etc. but that has now changed to the better.