Fearing MND/ALS: A Struggle

[LostLamb]

Hello,When it comes to MND/ALS I am a bad researcher, I cherry pick the medical literature to feed my fears and often ignore those articles (and neurologists), which could offer huge reassurance. i.e. I polarise my evidence to fit my symptom profile, to convince myself that my fears are founded and that I am going to indeed be the next diagnosed ALS patient. The other avenue is to admit I have health anxiety (but this is new to me as I have only ever had it about this disease), also secretly I feel this admission may jinx the whole thing and I will in fact actually have the disease after all. So I sit on this jaggy uncomfortable fence and not commit to jumping down on any side.Thought I would change tact and write about a good ALS article. I apologise if it has been mentioned before, but here goes. Hope it sooths some hyper excited nerves out there.It is an article which took a look at the incidence of ALS in Europe per age group and region. It chose 6 large databases and combined the stats from a 2 year period, so to have a bigger patient sample number and hence a more accurate result. Without going into the ins and outs of the paper (I will enclose the links at the end so you can do this yourself). One of the tables is of great interest to me as it gives age and gender-specific incidence of ALS per 100,000 person-years among those 18 years and over based on combined data from these six European ALS Registers for the two year period. Incident rates are all very well but let’s have the actual case numbers. Take the age group 30 -34 which seems to be a lot of people on here. Well out of 1,856,393 men in this group only 5 were diagnosed over a 2 year period, and only 2 woman out of over 1.8 million counterparts. That is a total of 7 cases out of over 3.7 million people aged between 30-34 (Incidence of 0.2/100,000) We know risk increases with age so let’s try the 45-49 age bracket. Here we again see how rare ALS actually is. Over a 2 year period out of a sample group of 1,565,000 age matched men only 35 were registered as having ALS, and similarly only 23 woman out of over 1.5 million. Total 58 cases out of just over 3.1 million people (incidence rate of 1.8/100,000Even if we look at the age band with the highest incidence which in this study was the 70 – 74 year olds, with an incidence of 8.3/100,000. Again this equates to just 172 cases out of over 2 million70-74 year olds.Of interest is the total for all age groups. The study looked at a population of over 38 million people and out of this there were a total of just 1028 ALS cases registered over the 2 year period So to recap the total over the 2 years from these 6 databases combined, Age 30-34 7 cases out of 3.7 million people. Age group 45-49 only 58 cases out of 3.1 million population size, and ages 70-74 172 cases from 2 million age matched counterparts.All the age groups are in the table, so you can check out your own.If in theory 6.7 % of all ALS cases in this study present with twitching as the initial symptom that is only about 70 of the registered patients (1028) out of a population of 31 million. 70 out of 38 million people will develop twitches that will turn out that turn out to be ALS. I understand this last statement is justa theory and not actual data. I understand there are limitations. The study does not include or distinguish inherited forms (mutations in neuroprotective genes that are passed through families) inherited), they class the above as spontaneous cases. The study was done a few years back but I am informed that the incident rate has pretty much stayed stable. Although there is better equipment and knowledge that may identify more cases, they also discount much diagnosis.Anyway links below.I know we will all still worry as I said in a previous post “Fools rush in where fools have rushed before” ….. and I am a bigger fool than most of you.Take care Love Helen xxx

 

[Gloria123]

Great post. It would be great if there was a study to compare the incidence of BFS, because I would theorize that it's much, much higher. My neurologist says he sees one person a month who comes in for twitching only (with the same fears we have all had). That's 12 people, for one neurologist in Denver. Let's say all of the neuros in Denver had about 12 people a year (I have no idea how many neuros are in Denver, but let's say 50) - you'd see that the incidence would obviously be much higher (600/year in Denver alone).

 

[JoshSon]

I know some people don’t like statistics and find them irrelevant. Personally I think statistics are important to help putting things into perspective and have a more balanced view of the reality. Statistics about air crash accidents are of course irrelevant for the person who precisely is on board of a plane crashing into a snowy mountain, but they are very helpful for the guy who’s stuck on the airport freaking to death about boarding a plane because he is so sure that he might be running straight to his doom. The “cognitive bias” in health anxiety makes people think that the odds of getting a certain disease are much higher than what they truly are. So very good post Helen, thx.

 

[LostLamb]

Thanks for your replies. To be honest I didn't realise how rare ALS was. I know it crops up in the media but then a slightly disproportional number of sports people get it. In Scotland we are football daft, and have recently had 2 very famous footballers with of it. They are constantly on the TV and in papers here. Also the gulf war increase in ALS cases hit the news again out of the blue recently. As has previously been discussed on this forum, some professional sports people have a slight increase risk of developing ALS, though nothing too alarming. ( mostly top flight footballers especially midfield players, and defenders with longer careers , seem to have a slight elevated risk ), probably they think they have greater exposure to neurotrama (head tramas), or constant daily contact with pesticides in the pitches, or the neurotoxic amino acid BMAA (produced by cyanobacteria which may be an environmental risk factor for ALS. They also think that exposure in the womb to an unusually high levels of testosterone give rise to driven, highly focused individuals with sporting fantastic elite physical talents, making them more likely to become the elite athletes. The flip side is this testosterone surge ( measured by finger ratio), seems to occasionally be neurotoxic, but still very small risk . I guess what I am trying to say is that it does crop up in the media quite a lot, making it seem more common than it is. I have friends who are ex and just ending career footballers so know how hard they train at the level they are at, god knows what the elite footballers stamina must be.J4Son I know nothing about psychology but I loved the sentence you wrote ....."The “cognitive bias” in health anxiety makes people think that the odds of getting a certain disease are much higher than what they truly are. ...... That will go in my book. I have a daft book called " "Helen Why you dont have ALS/MND". It is a scrapbook full of stuff from the last 2 years, and I can read when the fears begin to surface. I have letters from neurologists saying I have no evidence of MND. I have EMG reports, I have pages written about what neurologists said at the time so I can revisit the conversations, I have stuff I have printed off this website, including one liners and whole posts from some of the old timers ( which is invaluable). It is a physical book that I can hold and flip through rather than just an e version. I even have pages of other people who had fasciculations on their EMG but were fine. ( for a long time thought I was the only one that had the dam things recorded). My neurologist said most people that twitch will need needle in at least 90s per relaxed muscle to record a single fasciculation ( mine were recorded at 90s). If they twitch and you stick needle in relaxed calf for 3 minutes it will show, and it is benign. Most people who twitch dont get FP show up because needle not in long enough to capture random twitch. They only leave needle in long enough to see nothing is going on. They dont need to record a FP to see muscle is fine. Other people may have them, but they dont mention this unless asked to patients because they dont want to worry them over an insignificant finding,.....all written in my biook, so sad I know.Anyway thanks for the comments Helen x

 

[veryconfident321]

Being a long time player and midfielder the above comments are scary Thanks

 

[LostLamb]

The study was done on French and Italian professional elite footballers playing in top flight leagues at a level of fitness unsurpassed by other countries. The reasons are unclear but a lot of evidence points to an inability to clear waste products (neurotoxic free radicals)out of cells when the body is made to continually exercise at this unnatural level of stress, over a prolonged time (daily for years), They hypothesis that this may start a chain reaction in genetically suseptible individuals (genetics that probably made it possible for them to be elite driven talented footballers in the first place). IT IS ABOUT THE TOXIC EFFECTS on muscles and neurons, caused by VASTLY OVERSTRETCHING ENDURANCE, and inappropriate chemical treatment of injuries ( often banned), coupled to genetic predisposition. So the nervous system is probably under stress, the muscles are full of waste biproducts, and then throw in the pesticides, herbicides that they treat the best grass pitches with, ( far too expensive for local grounds maintenence budgets). Add in the constant knocks, and occasional illegal anabolic and stimulants, this is what they think might give the recipe for the slight increase in ALS in this cohort. It is about a combination of risk factors. IT is only about the highest professional footballers. It is not about the thousands of players who play for local clubs and for recreation. Low leagues WERE NOT similarly affected. Many papers used semi pros andd lower leagues as controls because there was no ioncreased incidence in these groups. These studies are not about Jo public having a good kick around, or semi pros. The footballers I talked about being in the papers were both retired internationals simply ending their careers in Scotland. There was no increased evidence of ALS/MND in profesional cyclists , and most other sports. I dont know at what level you played but if it is at semi-pro or for recreation then thousands of people in the UK play many times a week, and we don't have an increase in ALS incidences. The increase risk "WAS ONLY EVER FOUND IN PROFESSIONAL FOOTBALLERS playing for longer that 5 years at TOP fitness level. Please dont worry. Everybody can fit some profile of suggested triggers. People on here have spoken of being truck drivers exposed to fuel, some exposed to herbicides and pesticides, to lead etc. This study only concluded those in the TOP FLIGHT, and even at that the odds were very long still. Perhaps I assume wrong, that you were not one of those players or you would be driving around in a ferrari with your own personal neurologist on speed dial, an an EMG machine next to your treadmill.I am so sorry if I have worried you. I used to work with a monoclonal antibody called FoxP3, and they have found patients with depletion of cells with this increases the rate of progression in ALS.....I TOUCHED THIS STUFF DAILY...see I fit an increased risk factor............see I am scaring myself......they also say an increase in an inflammatory molecule called TNFalpha causes increase risk.....Aaaah I used to beg my best friend for his blood for my research as he was a great TNF producer,.....I have started to look at him funny when he drops things.Seriously sorry to cause you stress, but please be reassured this study does not apply to you. There is no increase risk except in this cohort of players !!!!! It would be like saying eating caviar over a period of 5 years gives you a slight chance of heartattack, then applying this too widely and saying I ate tuna last night I will have a heart attack in 5 mins. Dont read too much in to this. I was just trying to say because some famous sports people had MND/ALS it was in the papers and media a lot, making it seem more common.Helen xps does this reassure you in anyway. I edited the post to put in a bit more detail. Again sorry never meant to cause concern. I worry myself enough without doing it to others.