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View Full Version : What do you think caused your MND ?



Z3 Driver
31st March 2011, 08:59
Hi , i know there are many theories and some more credible than others. I have spent a few hours with a researcher at Sheffield . She is part of the new research centre there called Sitran.

We have talked about lifestyle, my places of work , contact with chemicals and solvents , previous accidents and operations , family history. They are also doing blood tests for my DNA and my sister's and fathers to find any clue's with the jeans.

But im convinced that a severe Mountain Bike accident i had in 2004 was the trigger. I had a clean break of my right shoulder , tearing ligaments , muscles and damaging the joint and clean break of the bones. At the same time i also broke the elbow joint.
After 2 operations with screws and plates i slowly made a full recovery . Terrible scaring but regained pretty much full strength. My arm never regained full straightness but that was never an issue.

So here i am 6 1/2 years later and my right shoulder, arm , hand is so weak and the hand dexterity is very poor.
So unless i am convinced otherwise i'll take this accident as the reason i have MND , the trauma my right side suffered during this time must be the trigger.
Coincidence , surely not !

G60dubber
31st March 2011, 09:33
This is interesting that you raise this, I first noticed my symptoms around Jan 2010. At the end of 2009, whilst sparring, I got caught with a cracking straight knee under the chin that split my chin and severely lifted my head up and back.... I have weakness in arms, hands, trunk and legs. I've had MRI's and have cervical spondylosis and 'worrying bone changes' as they call it in c4/c5. I went from having exploration done on my neck to being told I had MND within a week of being an inpatient for tests!!!

I asked my neuro whether there was any correlation between this (and previous neck injury, bone breaks and ligament tears I've suffered) and he said no, me personally I don't know. I would like to explore this further but struggle to get the opportunity with any experts. I too attend Sheffield and would like to do what you did and sit down with someone there to discuss it in the depth you have.

Chris
31st March 2011, 09:48
i cant help but think the so called harmless oil that the CNC machine ive used for the last 4 years kicks off is the cause! its like a mist across the workshop even with extraction unit. Breathing that in 5 days a week cant have been good. Unfortunatley i think i will never find out the cause.

hilary walklett
31st March 2011, 11:07
This is very interesting. My condition (Kennedy's) is genetic, so, strictly speaking, I was born with this. One of my elder brothers had it (the other two didn't), an Uncle had it - his grandson has it and we are waiting to hear whether my grandson has it.
My Uncle had a massive motorbike accident when he was about 16 and had tremors in his hands ever after - this is one of the symptoms of Kennedy's. My brother fell out of a tree when he was about 22, then, when he was about 40, fell from the flight deck of an aircraft carrier into the hanger, some thirty feet below. I don't know if my secomd cousin has had any trauma, and my grandson certainly hasn't so far. I have also wondered if it is trauma which triggers the onset of this condition.
As to ALS, there does seem to be a high incident of it among people who play contact sports, such as football and Rugby. Dr Mark Turner, a clinician who does research into MND at Oxford Uni, has a theory, unproven as yet, that some people are born with a ptoetential for MND which is, indeed, triggered by trauma as Z3 and G60 have suggested.
It will be interesting to see if Mark comes up with any further proof.

Hilary

MattJ
31st March 2011, 16:25
Hi all,

I also believe that the start of my mum's symptoms (Jan 2010) began after she had some major dental work. This work resulted in quite a serious infection and after a few weeks of this she noticed and highlighted to her dentist that she had trouble pronouncing "s" words.

This is one of the reasons why it took so long for us to even consider that she had MND. We all assumed a nerve in her mouth had been damaged from the dental work.

But who knows, maybe this was just a coincidence!

Matt

Vane
31st March 2011, 18:21
Hi all,
Its very interesting hearing different peoples accounts of run up to MND. I had serious muscle problems for years which was never diagnosed but also fell and broke my leg (very severely - plaster for two years) and it was in this leg that my symptoms began!
vanessa

luce
31st March 2011, 19:54
Hi all
My mum is convinced that her MND started after surgery
SHe had part of her lung removed and was down in theatre for a long time, no lung cancer found. Less lung removed than planned. Symptoms noticed within a couple of weeks. Initially we just assumed that it was the recovery from surgery however things just worsened.

Bulbar onset. Now very difficult to understand her speech. Affected worse on the right hand side of the body.

PS- Have logged my mum on as a forum member, she will update about herself when we have time (she is margaret)
Lucy

Graham
31st March 2011, 20:11
Hi All,

Prof Nicolson in the US has written on mycoplasma infection in the CSF as a agent/cause of sporadic MND. I have found Clarithromycin to have spared me from the ravages of chronic fatigue, an associated accomplice of MND.

Best wishes

Graham

SGD
31st March 2011, 22:03
Welcome Margeret!

jadedjohn
31st March 2011, 22:07
im convinced making bio diesal brought mine on - the onset was shortly after i started making the stuff - chemicals Methonol, caustic, and dirty old chip fat.

hilary walklett
1st April 2011, 16:43
That's a few of you who've workedd with cheicals - it does make you wonder, doesn'e it?
BTW, I notice that I was so concerned talking about my relatives in my post, above,that I forgot to mention my own life-threatening car crash, back in 1976, when I split my head open. It was following that that I notice hand tremors, badly enough so that I had to give up model-making. This was nine years before I was diagnosed.

Chris
1st April 2011, 17:00
With people mentioning stuff about accidents or injurys the only thing that happened to me was coming off my 125 motorbike in September 2009, now it wasn't anything major but i did suffer a cracked rib, whiplash and a few cuts. Ive never really thought about it being a possable trigger of MND but you never know! i first started noticing slight weakness in my hand December 2009.
Wheather its this or the oil vapour, i'm paying for it big time.

soniamm
4th April 2011, 17:33
Hi my son has had no trauma other than football scuffles and the odd schoolboy fisticuffs when growing up, we have no idea or no explanation as to why he developed MND, the nearest we can get to is that he worked in an environment where there was a lot of asbestos lying around. He was there for 2years......food for thought!! his symptons started showing around Dec 2009 2 yrs after he left ( same as Chris) he has weak hands arms. Pretty down at the moment.

Sonia

Graham
3rd June 2011, 23:14
Hi All,

Myelitis is closely associated with MND, of the PLS variety as the cables connecting the upper motor neurons to the lower motor neurons then onto the muscles, are damaged.

This is the first authorative post I have seen that explicitly states infection as the cause of MND like disease.

http://en.wikipedia.org/wiki/Myelitis

Best wishes

Graham

PoetChristopherRobin
24th July 2011, 14:31
As a teen I used to ride my bike back and forward from work four times a day, and when courting I used to walk numorous miles at pace regularly, from what thry say about sportsmen its possible?

daine.scott
1st August 2011, 05:18
This may seem a bit unusual but I believe dieting to be a reason for MND. My aunt since her pregnancy became fat and was always trying different ways to become thin. One day she took General Motor diet plan and started following. The weight loss was visible but she seemed always weak. She was later diagnosed with thyroid and since then her health is deteriorating all the way until she was found to be having MND.

steve67
7th August 2011, 20:46
1,it runs in my family
2,anxiety
3,exhausting work outs in the gym
4,the tetra police radio i use at work
5,broke big toe in 2 places 10 months before this all started for me

twitcher1
9th August 2011, 11:34
I still think that it was the swine flu vaccine i had in 2009.Doctors dont commit theirselves even with a hint.What i would like to know is how do they its in your body long before symptons show as there is no test and you only go to the doctor when you have symptons

ScrummyMummy
26th August 2011, 17:50
These accounts are all in line with what we have been told about the onset of my Mother's MND ! She was dragged out of a safari truck by her ankle and lost her calf when the elephant's tusk went through it. In addition she had a cracked shoulder and severe bruising to her right arm. The Motor Neuron Disease stated in her right thumb as what the GP believed was a trigger thumb! After an operation to relieve the nerve it did not recover and muscle wasting started to spread up her arm and effect her whole arm. She was diagnosed with MND finally after a whole year of being told that she had trapped nerves in her shoulder.
It is now 11 months since her diagnosis and she has lost the use of both legs, all the use of her right hand and most of her left. She also has weakness in her diagram and her speech slurs when she is tired.

There is a family history of the disease . Her brother died of the bulba version when he was 65. Up until the accident Mum was an extremely fit 72 year old lady!

elle
2nd September 2011, 21:22
Hi i am a new member i too had a bad fall in 2008,and i believe that was the trigger to my mnd i was fit and extremly active till then i hate my none existant life now it has no meaning at all to me i will never accept this cruel devastating disease.elle

Alienista606
4th September 2011, 08:45
MY case.....
1997.2003.2004 have big knee operation and in last in 2004 have ACL reconstruction whit some biodegradable screws.
2005 start working whit alloys ( grinding cleaning whit powerful chemical)
2007 move my job to CNC dep. then in 2009 have some accident at work and all problems begin,
now have weakness in both shoulder and hands and dexterity has well all lower part its still ok only my back still hearts me so much..
Max
p.s. hem................ interested so many of us have MND after accident......

Toppers
22nd November 2011, 13:19
Hi all

Although I have PLS about 4 years ago I had a serious injury to my right foot and after that symptoms started to appear although slowly. I didn`t have any surgery and my foot healed on it`s own but I can`t help feeling that after speaking to a few other people who have MND, some of them have had operations and some have had a back injury which could be the start of MND but having the operation may have given the body a shock which may have started a trigger that sets it off.

I`m not saying that is the cause but how many people have had an operation or a injury which may have released or caused problems with the body and set off a chain that in some people have lead to MND.

Now I don`t want people thinking I am blaming operations because I haven`t had one but as I said I had a very bad crushed foot and has that set a chain of events within my body that has started it all off and therefore could an operation stress the body and in some start something that could cause MND.

Anyone got any ideas or is it coincidence?

Pete

Robyn Copley-Hirst
22nd November 2011, 13:35
Hi Pete,

I remembered this thread from a while back and thought it may be useful to see everyones ideas all in one place. I seem to remember a few people saying similar things to yourself here a while back.

I hope this helps,

Robyn

luce
22nd November 2011, 19:42
Yeah my mums symptoms started shortly after she had part of her lung removed, lenghty operation

Z3 Driver
22nd November 2011, 23:53
i also have another theory,

in August 2009 i fell backwards in an accident banging the back of my head against the concrete floor and suffered a momentary blackout, then all suddenly came back to me. isnt the rear of the head where you upper motor neurone is ? it was the winter of that year i got my first symptom.

and another

has anyone suffered an electric shock? the brain is so complexed and im sure any electrical current could upset its function. no pc would continue working correctly.... just a thought.

paul-uk
24th November 2011, 23:32
What's your opinion on this theory:

http://floridadetox.com/lyme-disease-found-in-100-percent-of-150-als-patients

Personally, I think sporadic MND is caused by a build up of toxins, but not sure exactly what triggers MND in some people but not others. I do believe detoxing can help it, but it's unlikely to be a cure.

I too had a bad fall banging my head on a concrete floor and blacking out for 6 hours, but that was 5 years before the onset of my MND. Having worked for BT as an engineer, I've also had many electric shocks over the years ranging from 50v up to 240v, but none within the past 3 years.

Graham
25th November 2011, 23:14
Hi All,

The evidence is your immune system is responsible for your MND.

Whether the immune system is battling infection in the Central Nervous System or has been triggered into a motor neuron destruct mode is w.i.p.

Further details in the Neuraltus -NP001 thread.

Best wishes

Graham

inteltec
26th November 2011, 07:26
I think my MND was caused by what my consultant said "a faulty gene"

you can all come out with all different ideas and if it was that simple to know your cause then its even more simple to find your cure!!!!

Alienista606
26th November 2011, 12:34
Graham...
hem yes......right...like me
I have 2 or 3 Epidural injection so my immune fight whit this to "reaper" my blocked spine cord
since this have continuously back pain and always my Neuro say.....have some sort of inflammatory but haven't know where and why
now know L5/S1 making my back pain so........MND "
Whether the immune system is battling infection in the Central Nervous System or has been triggered into a motor neuron destruct mode "
sounds right for me so this is why exchange our filling and story is so important
Max

Countyboy
26th November 2011, 16:17
Hi Everyone, I beleive exposure to chemicals has had an influence on my immune system. During the late 1960's I was exposed to high levels of carbon tetrachloride. At the time I was working on the installation of 1500 mega watt generators at Aberthaw "B" power station, and used carbon tetrachloride to clean some electrical and mechanical equipment before fitting on the generators. Later through the 1970's and 80's I used a lot of different chemicals in the treatment of water used in the production of steam and high temperature hot water. I was also exposed to aircraft paints which were known to affect the bodies nerve system. during the same period I was also exposed to higher than normal levels of radio active materials. All while working for the Department of the Environment at a near by RAF base. It was while working there in 1987 I started with my first symptoms of MND but I was not diagnosed until September 1997. I firmly beleive my MND was caused by the chemicals I was exposed to during my working life.

After saying that, several neurologists have suggested that my life style was probably the cause. Apart from working full time plus overtime, I also worked in athletics. I was a club committee member for over 12 years 8 of which I acted as Vice Chairman. I also represented the club on various AAA committees, and worked as a time keeper during track, road, and cross country meetings. During this time I was also a Town Councillor, and during the year 1988 / 1989 acted as Town Mayor. From this you can see I was a very active person getting very little rest. The neurologists that have looked at what I was doing have all said the same thing, that I burnt myself out and my MND is a result of that burn out.

But if I had the chance I would do it all over again.

CB.

warrenward
27th November 2011, 12:36
Is there anyone who can think of no reason at all for getting MND?

Batty
28th November 2011, 12:06
Is there anyone who can think of no reason at all for getting MND?

Welcome to the forum, do you have MND? If so everybodys view is welcome, as sufferers we try to stay positive.
Regards Mark

Batty
29th November 2011, 11:13
I believe MND is caused by a drop in the immune system which allows the motor neurons to be attacked, I think this is an individual combination of toxins and injuries which trigger the break in the immune system.
A lot of time and money has been used to find the cause of MND, hopefully to find a cure-but how about a repair to the symptoms such as rewiring the body with something like fibre optic cable-surely the technology is out there.
Over to the experts.

Graham
29th November 2011, 19:48
Hi Batty,

Your comment is in line with current research. Anyone newly diagnosed should ask their consultant if their macrophage levels are elevated.

Best wishes

Graham

twitcher1
30th November 2011, 19:59
HI Batty

Makes alot of sense to me as my symptoms , Fasciculation everywhere,started 10 days after having the 2009 swine flu vac..This had adjuvents in it to make the vaccine work quicker.It also only become effective after about 2 weeks.Coincidence?...Idont think so
best wishes
Paul

kelly
4th December 2011, 15:51
i think my partners mnd was caused by strenuous gym sessions he also had a back injury about 8 years ago xxx

peepyh
10th December 2011, 17:42
I didn't have a trauma/fall/operation that I can think of. I started working out seriously when I was about 26 and I developed MND when I was 32 - but most people my age run or play tennis or go to the gym and don't get MND. So I think my MND was caused by a genetic fault within me. Whether that's true or not, believing it helps me deal with the sheer bloody unfairness of it all.

iheartbristol
15th March 2012, 12:49
My Mum suspects my Dad's was triggered after being on steroids for asthma for too long.

Also I've been told randomly by someone that there's a greater prevalance of it in proffessional footballers and my Dad played in a lot of football competitions when he was younger (20s and 30s) - although for the military. I've not really looked into this but there might be something in it.

JONESY
15th March 2012, 13:31
I wondered whether infection was implicated as I had looked after 2 patients with MND in last 2-3 years. But why would that affect me their gp and not their close family living in the same house. My consultant told me it often affects active people with a healthy lifestyle but that there must be a genetic link.

pete
15th March 2012, 16:22
To this day i am so convinced it was the operation on my carotid artery. Being told it was 70% blocked and a matter of some Haste to unblock it ,My speech had been slightly slurred before the operation, but i was told this was likley due to the Stroke i had suffered prior to the operation, The fact that i was told my op would be around half and hour ,it in fact lasted three hours plus, I was told my plumbing was not so straight forward as most , the upshot was ,it never was unblocked and now never will, all i know for sure is my speech gradually went downhill from then . i also know that there are several nerves that control swallowing and tonuge functions in the very same area of the operation site .. co incidence i think not , but no one offers any reason as to why it all stemmed from that day ,two years later almost and now mnd bulbar ????

Mads
16th March 2012, 13:32
Hi all
Im an ex footballer who has been a lifelong fitness freak , I have trained virtually non stop since I could kick a ball and I have pushed my body to very high limits from contact sports to yoga, so to be diagnosed in 2010 was an still is a complete mystery to me . I have since been told my uncle had it in the 80's, I wouldn't say the cause was down to over training I am a believer in healthy mind healthy body.
My life has changed dramatically from being very active to being a proper lazy arse!! but like most people on here I'll never know .

Pepper
17th March 2012, 23:48
My husband has always played sport and kept him self fit. His symptoms started after a routine op, surgical hernia, went horribly wrong - surgeons cut his aeorta! He had been seriously ill before and battled that illness with the most amazing courage. We often joke that if we wrote his story in a book readers would just not believe it!!

Looking back now ,with the diagnoses of MND, he believes his body has just had enough and is slowly shutting itself down. He remains true to form and is constantly thinking of ways to adapt how he does things ( he is an engineer) and continues to exercise in what ever way he can.

elle
18th March 2012, 00:09
Hi Pepper,
just read your post, there maybe something in that what you say it maybe that all our bodies have had enough,
and decided to shut down who knows? Don't think we will ever know but still a good theory.

Take care x Elle x

magic
18th March 2012, 07:49
Peter will always start his tale with, 'I went for a hearing test' This showed a dramatic loss of hearing in one ear. This lead to an MRI that found a tumour. This lead to brain surgery and I wonder if the trauma of this was the cause. We will never know.

Magic

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