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fishmate12
12th January 2015, 17:51
Chat away,..??????????????????????

pete
12th January 2015, 17:59
chat away,..??????????????????????

for heavens sake take a happy pill

Steve
12th January 2015, 18:03
I had a filling once.

Trevorhb
12th January 2015, 18:23
Had a check up today, teeth OK but did need a clean. As I cannot speak, I wrote a letter to the dentist and handed to him when we were called., covering such things as cannot lay flat, too much saliva, etc.

miranda
12th January 2015, 20:50
Was expecting to see words of wisdom from Ray!!!

Alig2014
12th January 2015, 20:59
This is in reference to a new member mentioning root canal treatment on Rays thread earlier and it going off topic.

Bless them I hope we haven't scared them away.

Alison x

Springtime
12th January 2015, 22:51
Chat away,..??????????????????????

Ray............Behave yourself young man, and don't be sooooooo grumpy, cos we all know you mean well really. CHILL. Hugs to you as always Springtime x

ccinjersey
13th January 2015, 01:21
Lmao ;) again!

Bilando
13th January 2015, 08:08
To bring a little sense to this post my NHS dentiist offered to visit me at home. He came (13 miles) and He pulled the wrong tooth out ! My fault so he came again and pulled out the one causing the trouble. Good job I only eat mash - white mash, brown mash and orange mash - who needs teeth ? Ian

Tikitiboo?
13th January 2015, 09:29
Dear Allison

Thank you for your concern. I am so surprised at the 'hornets nest' I've unleashed. I appreciate everyone's comments on both threads.

My good wishes to you all.

Anna

john
13th January 2015, 09:36
Thanks for sharing Ian.
My earlier post was talking about causes of mnd. There are thought to be many trigger events.
Some I have read of are :-
Bangs on the head
Surgical procedures
Stress
Ill health
Mercury and other heavy metals in the body
Insect bites
I was suggesting that invasive procedures such as root canal fillings could be compared to surgery and may have proved to be a trigger for the mnd that followed. My wife always felt her mnd was triggered by a fall on ice in the winter of 2009/10 when she banged her head on the frozen ground. I will never know if that was in fact the trigger.
The theory is that the trigger provokes an ER stress response in the body which starts to carry out the necessary repair and gets stuck in that mode so what starts out as a protective event eventually becomes toxic to the body and the neurons which were originally being supported by the reaction . This toxicity stops the neurons functioning as they should and instead destroys their ability to carry out their role in the body.
John

Springtime
13th January 2015, 10:16
John I personally agree with the fall theory, of course I have nothing to support my belief other than 2007 Jim had a nasty fall off a ladder and banged his head.

Breadnjam
13th January 2015, 13:20
My Hubby has never had a fall or banged his head, in fact has never had any injuries that required medical intervention until he was waiting for his MND diagnosis, he is now making up for time with lots of falls.
There is so much that we don't know, my hubby did work in the petrochemical industry for 30 years.
Love Jam

Wise owl
13th January 2015, 13:44
Hi Spring & John, I too had a bad fall with a head injury not too long before my early symptoms, so yes the sudden shock to the head could be a trigger .
Best wishes to all Mick.

ccinjersey
13th January 2015, 13:48
Bangs on the head
Surgical procedures
Stress
Ill health
Mercury and other heavy metals in the body
Insect bites

I've had all of the above John. Makes you think, and scary stuff. Kind of like figuring out what causes cancer...from the air with breathe to the food we eat, to our electrical appliances, on and on....

xox

ccinjersey
13th January 2015, 14:13
And what about cell phones? What signals are they putting out to our brain considering they are on our ear. They can’t be good for our health ? I’m sure it will be discovered they are messing up the wiring in our brain somehow, someway in a matter of time.

Xxoo

mik
13th January 2015, 23:47
i have had a lot of bumps and bangs when i was a kid, i dont think i could blame them for MND.i was pretty reckless before i had kids i smoked to much, drank to much, smoked a lot of cannabis and lived on junk food but the moment my wife said she was pregnant i stopped smoking that very second, i saved my drinking to the weekends and cut down on the junk food. i have always worked outside, so i've been bitten by virtually every bug common to the UK and as a materials tester i worked with closed source nuclear gauges, thought i might get super powers from that not a terminal illness!
i suppose you could say any them could be a trigger, i dont believe so i think its pre-written and what will be will be.
oh and all i got from my dentist was a sticker.
mik

Steve
14th January 2015, 10:54
Bangs on the head
Surgical procedures
Stress
Ill health
Mercury and other heavy metals in the body
Insect bites

I've had all of the above John. Makes you think, and scary stuff. Kind of like figuring out what causes cancer...from the air with breathe to the food we eat, to our electrical appliances, on and on....

xox

I have heard all of the above. Maybe we are genetically high risk and all it needs is a trigger.

Personally I had several concussions playing Football. I was blue lighted in after a bad one when I started vomiting with blurred vision etc. Is that a factor? Who knows.

Springtime
14th January 2015, 11:04
When I think to deeply about this, I get so frustrated. Jim started with FTD over 6 yrs ago, although not acutally confirmed until 2014. His fasciculations, muscle loss etc were picked up July 2014 and he was diagnosed with MND/FTD Sept 2014. They have told me that in 3% of cases MND can start first followed by FTD or as in Jims case the other way round. I wish someone could explain to me in terms that are easy enough to understand why they are linked and if this gives them any indication to a cause. I can go through so many things as most of you on here can for example Jim was in the army, he did a bit of boxing, played football, was always banging himself, worked with chemicals and various materials the list is endless. And the only concrete thing we have to go on is the link (in Jims case) with FTD and MND. I hope this post makes sense!!

Steve
14th January 2015, 11:16
You have ticked almost every box. People in the forces are at a higher risk. Maybe mental stress or maybe because of a higher level of fitness so putting more stress on the body.

Jan
14th January 2015, 13:52
Before my diagnosis and decline I was a long distance runner doing marathons and ultra marathons, I do think that that played a part in this

john
14th January 2015, 20:16
Jan

It does come up time and time again that people who were especially fit like athletes, boxers and service personnel are more likely to get mnd than others. Various theories as to why but I tend to agree with Steve that unless you have a genetic predisposition you won't develop mnd.
On alstdi theories abound and for athletes it is said that generally their training goes to the point of tissue damage.( no pain, no gain) it is this damage which makes the body vulnerable and ultimately lets mnd start.
John

marieline
15th January 2015, 02:54
Well If it is at all relevant, my symptoms started soon after a root canal. MND was the last thing on my mind, when i lost my speech, started drooling, choking. So after many assessments by professors of surgery, extraction of the tooth and my symptoms not reversing, i realised that it was something more sinister. I thought of Bulbar palsy straight away being a nurse, but it was that sudden that i refused to contemplate that possibility. But once the MRI eliminated a brain tumour, my hope started to dwindle. So folks freak accidents will happen. You may have a mouthful of mercury, but if you are acting like the nervous Nelly, or suffers depression, anxiety, you may wish to read more about mercury toxicity. Root canal therapy was listed among the causes of MND as far back as 2005. So it is not that far fetch.
Best wishes
Marieline

ccinjersey
15th January 2015, 03:32
Well a root canal can be officially added to my list, along with a few hard hits on the head, one that actually casued a concussion. This concerns me and puzzles me? My dear friend hardly had anything on that list, besides and insect bite, an some fillings?? and she has no family history of mnd.

Is it just one of those things on the list that can bring on this illness or a combination of a few? If it was just one of those things shouldn't more people have it ?

Steve
15th January 2015, 12:23
We're just speculating CC. These are all possible factors that may tip the balance. There is probably an underlying genetic cause so the majority of people don't need to worry. There will prob be people with the genetics that never develop the disease for some reason.

njm
15th January 2015, 12:33
Dear Thread Members:

The question of what causes MND and the question 'why me?' is something we have all painfully engaged with. And all have come up against an array of explanations as to underlying causes and 'triggering' events. I have spoken to the top researchers and clinicians in the UK in trying to reach some understanding of why me. The understanding I have distilled from all these disussions/conversations and readings is as follows:
1.All people who develop MND are likely to have an underlying genetic predisposition. The genetic research is increasingly pointing to this conclusion. I have been told that genetic testing on 'sporadic' cases is showing the same underlying genetic occurrence as 'familial' cases.
2. 'Sporadic' does not necessarily mean non-genetic. It means the occurrence in those families is sporadic and could skip generations etc. Thus, for some reason, the disease manifests very rarely in that family whereas in 'familial' the expression is more aggressive. Perhaps there are different gene variants that make it more aggressive.
3. The logical extension of this is that a lot more people (in families) carry the gene mutation but do not ever manifest the disease process. Thus in most gene carriers it does not trigger. My own family is an example. My father developed MND at 78. Nobody in his family before had MND. So he was the first. So he would have been considered 'sporadic' given the lack of family history. But now I developed MND at 58. So, now the category has changed from 'sporadic' to 'familial'. So I inherited a gene from my father. By implication he inherited it from one of his parents. But there was no family history and both his parents lived to old age. So one of them must have passed the gene on to my father. There were no paternity questions so we know they were indeed his biological parents. The implication is the gene lay dormant in one of his parents and theirs before them and those before them. It was passed down the generations and has converted into disease expression in my father and me. It begs the question why? What were the 'triggers' in my father and myself that was not shared by his forefathers.
4. My 'trigger' explanation is as follows: My father and I were both active sportsmen. He retired from a lifetime of football at 52. I continued playing highly competitive squash and long distance cycling right up to symptom onset at 59. I believe that in my family the trigger was a lifetime of exhaustive exercise and explains why I triggered at 59 and my father at 78. My sports intensity was much more extreme than his. Neither of us had any of the other suggested 'trigger' factors. Prof Pam Shaw's research group are fairly convinced that 'exhaustive exercise' is a recognized trigger in genetically vulnerable individuals.
5. Sport is clearly not the only trigger. In others the triggering factor could be one of the other 'hypothesized' culprits.
6. So my understanding rests now as follows from what I have been told by various experts: That MND likely has a genetic base. Sporadic and familial both are likely to have a genetic base. That it can sit 'dormant' in families for generations and that it in fact only gains disease expression in a minority of genetically pre-disposed people. And that there are a range of triggering factors.

These are my own internal thoughts on this vexing question "Where does this come from?".

I could be wrong. I submit my thoughts with full humility. I am a layman and no expert.

Thanks for the opportunity to share my thinking on this thread.

Best to all

Charles

Trevorhb
15th January 2015, 12:46
Very interesting and informative Charles, thank you. I tend to agree it is genetic, but what triggers it in some people and not I others is unknown. It does appear that many of us are people who kept fit and took part in sports. Understanding genetics could be the key to unlocking many diseases and we all hope this applies to MND in the future.

Springtime
15th January 2015, 18:27
Charles, It was indeed a very interesting read and put together very well.

Rachel
16th January 2015, 00:14
Thank you Charles - an interesting piece from your considered research. Rachel

marieline
16th January 2015, 05:01
Yes NJM "TRIGGER'. MND is certainly no different to other diseases, only expressed when exposed to triggering factors. It does not mean that we have to avoid those things, although it is well documented now that it might not be so wise to have formaldehyde in one's tooth. There are always better alternatives. As for high performance sports, there are the 3 Italian football players, Lou Gerhig himself and 1 renowned high profile sportsman in Oz newly diagnosed last year. Connection? Researchers are working hard to crack the mystery as to why our brain usually so capable to performing at high level, suddenly seizes to keep up.

Best wishes
Marieline

Trevorhb
16th January 2015, 11:13
Although some of us do wonder if fitness has a connection with those who get MND, when you think of the huge number of people involved in sports and keep fit, only a tiny percentage get MND so probably it is not related.

Steve
16th January 2015, 11:59
It is important to understand that not all people who are exposed to these things will develop MND. It is a trigger for a genetic predisposition.

The link between Sports and MND is pretty well established now and a study last year further proved a link, but as Marieline says, the benefits of an active lifestyle outweighs any miniscule risk for the general population.

marieline
17th January 2015, 03:10
We who have been diagnosed, had a predisposition, like many i am sure who live a healthy life, and who may never express the symptoms of MND in this lifetime. In many cases we would have already been harbouring the disease even though we did not have any symptoms. Some neurologists are saying maybe even going back 5 to 10 years. Perhaps if we think carefully we may find that we had odd symptoms that we didn't have when we were younger. The body was able to compensate until that major trigger. There are more high performance athlete around than MND cases, so i would say do not stop doing sport.
If you think carefully there would have been a trigger whether traumatic, emotional, psychological, hormonal, infection, heavy metal and so on. By saying that i expressed symptoms of Bulbar palsy after a root canal, it means that a root canal is able to trigger the disease if you have a predisposition.
I understand that we are all hoping to find a collective causation, hence collective treatment, in my view, this could be rocket science. Gene therapy is looking the most likely cure from my point of view.

Springtime
18th January 2015, 13:13
I found your post Marieline interesting. Going off on a tangent here, but interestingly 6 years ago my husband went through a few months where "out of the blue" his face would contort, I can only describe it that he looked as if he was having a slight stroke, this then developed into Jim taking a sharp intake of breath for about 30 secs when he couldn't speak, but pointed to his mouth to tell me he couldn't speak. It soon passed and was all very strange. Anyway, we went to the Docs, and Jim was sent to a Neurologist who I think also baffled, a stroke of any kind was ruled out and the Neurologist diagnosed seizures. I totally disagreed with this diagnosis. But, Jim was put on medication for this, which made him like a zombie, I fought to have his meds changed (not an easy task) after a couple of years of me insisting it wasn't seizures his meds were changed. He was not "zombie like" on these new meds but I still I didn't think he needed them, however I dare not go against the Consultants advice, until Jim was diagnosed with MND and I finally found a Doctor who agreed that I could possibly be right so, with his help we began to wean Jim off these horrible meds, it took 6 weeks and he has now been off them for nearly 3 months. And no side effects thank goodness. And more to the point on seizures. So, he had been on serious meds he should never have been on!! I don't apportion blame at anyones door but my point here is this......I now wonder, if what was going on 6 years ago was perhaps the start of MND, which of course I understand, nobody would have indentifyed at that time. One thing is certain and that is SOMETHING was going on and it definitely wasn't seizures, was it the start of MND well I suppose we'll never know and perhaps I am just grasping at straws.

Phillip
7th February 2015, 04:03
Hi
Interesting to know your thoughts on possible causes and triggers. I have been researching because of a very close friend.
I can see the connection to sports people, as one of the triggers is known to be injury. Although the injury need not be severe, as in requiring hospital treatment, could it be possible that the trauma is enough to damage the blood brain barrier or the blood spinal barrier allowing access to a toxic invasion in the area of the lesion?

I do believe, like many of you, that there is a toxic issue involved, including the the potential toxicity from root canals.
Because of the honeycomb structure of a tooth it is impossible to fully sterilise it during a root canal filling, therefore as you probably aware, this leaves bad bacteria in the tooth which becomes a toxic producing factory in close proximity to the brain and spine

The power of toxins
I personally know someone was confined to a wheelchair and diagnosed with MS, after reading an article on aspartame, she stopped all artificial sweeteners - she always used sweeteners and not sugar - within 2 weeks she was out of her wheelchair. I know this is not the same as MND but I mention it just to show the power of these toxins and how they can destroy our lives.
Love to hear your comments
Thanks

Incidentally, I hear that high CBD cannabis is giving good results for slowing and even stopping progression. Has anybody any feedback?

marieline
7th February 2015, 06:58
I found your post Marieline interesting. Going off on a tangent here, but interestingly 6 years ago my husband went through a few months where "out of the blue" his face would contort, I can only describe it that he looked as if he was having a slight stroke, this then developed into Jim taking a sharp intake of breath for about 30 secs when he couldn't speak, but pointed to his mouth to tell me he couldn't speak. It soon passed and was all very strange. Anyway, we went to the Docs, and Jim was sent to a Neurologist who I think also baffled, a stroke of any kind was ruled out and the Neurologist diagnosed seizures. I totally disagreed with this diagnosis. But, Jim was put on medication for this, which made him like a zombie, I fought to have his meds changed (not an easy task) after a couple of years of me insisting it wasn't seizures his meds were changed. He was not "zombie like" on these new meds but I still I didn't think he needed them, however I dare not go against the Consultants advice, until Jim was diagnosed with MND and I finally found a Doctor who agreed that I could possibly be right so, with his help we began to wean Jim off these horrible meds, it took 6 weeks and he has now been off them for nearly 3 months. And no side effects thank goodness. And more to the point on seizures. So, he had been on serious meds he should never have been on!! I don't apportion blame at anyones door but my point here is this......I now wonder, if what was going on 6 years ago was perhaps the start of MND, which of course I understand, nobody would have indentifyed at that time. One thing is certain and that is SOMETHING was going on and it definitely wasn't seizures, was it the start of MND well I suppose we'll never know and perhaps I am just grasping at straws.
Well interesting ly enough springtime, from a very active person who suffers the odd seasonal cold and sometimes a bronchitis. I started having severe torticolis as well about 6 years before i developed the bulbar symptoms. Basically lifting my face to give my husband a kiss in the morning would cause one. I never seek medical advice, just went to an acupuncturist whenever it happened. it was very debilitating. My neck became so weak at times, that my head felt too heavy to carry. About 2 years before i also felt a mucous in my throat that lead to the constant swallowing, again i took homeopathics. So as you can see, because we are so busy getting on with our life we failed to notice the small changes. There was the sleeplessness, constipation, weak ankles that twist regularly, a few falls before the neck problems started. These are certainly diseased symptoms. Should people start to worry if they are prone to falls? as you can see although i was not attending the hospital, i was seeing an acupuncturist, doing yoga, seeing a homeopath on a regular basis.

DaiTheDragon
7th February 2015, 19:23
There are so many theories about what starts MND and nearly all of them apply to me.
I have always been very fit and before I had a nervous breakdown I was mountain biking and I think very over fit.
I have always suffered from stress, depression and anxiety.
I have had root canal and a lot of work on my teeth.
I have a few bumps and knocks where maybe I should have gone A&E but didn't.
The one thing for sure that I know is that I am bloody unlucky.
David

Terry
7th February 2015, 19:34
I'm similar to you David;

I think stress had something to do with it but the experts say no.

Your right, we are Blxxdy unlucky.

The best, Terry

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