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boreham1
28th October 2014, 23:55
I haven't seen a database on here for basic cross reference, like a questionnaire. Something we as MND club members could fill out; just yes and no answers. Even Excel with basic formulas would give some numbers? I personally don't care if my recreational drug taking history is written down somewhere but more importantly things like Tramadol, tegratol, allergies, work based chemicals, acids , alkalides, even paint? The more people who add life experiences they might see as a trigger (accidents ect.) the bigger the questionnaire. The more people who fill it in the bigger the number of coincidences that could be checked out towards a possible cause? At diagnosis I was asked very few questions about my life up until then! By the way I am still on two legs if not a bit wobbly. The right foot is held with a foot up or a brace and the top of my leg has a bit of wasting and is weak. Unfortunately the left leg is starting to slow down now and a stick is the order of the day for a little bit of reassurance outside the house. I had a couple of beers the other night for the first time in ages. Trying to get out of the pub felt more like six (in my legs) but we made it to the car and a good time was had by all! Going up to the Farleigh for some physio next week. Still no PIP yet but we are scraping by! Bought a mobility scooter from fleabay, a Kymco midi XL. So far I have just ripped up the lawn on full power and I intend to get to the pub on it. Our local pub is landlocked and there’s no car park so it will get me right up to the door. Any way i had better be off to my bed, talk soon, Colin.

fishmate12
29th October 2014, 02:12
You won't see, or need, a database in a chat-room,..besides
after about 30-40 pages, who's going to check them all for any similarities?
If you haven't got Sky,..and want to pass the time,..assimilate something usefull,

To guess what the cause is, when know-all Neuro's don't know, is futile,..you cannot treat it!!
Instead, accumulate all known treatments, remedies, apparent cures, etc, from the Web,
See if you can see a treatment in amongst it,..that would be far more useful than a database.
Ray

marieline
29th October 2014, 03:37
Hello Colin, i see your point, could be difficult though. Find a common cause and you may find a cure or at least a reversal. and also a database of remedies and treatments may be included. That could be bulky but could make for excellent research materials. It has to my opinion never been done in this magnitude before, but not impossible. Best of luck
Marie

Terry
29th October 2014, 11:37
Hi Colin;

There are so many possible causes in my case and many others. I think that is why much of the research is done on the hereditary type. It seems to be quite global and across the board. Quite fit people get is more that average people.

Good luck with your quest, Terry

boreham1
29th October 2014, 16:04
I do seem to be finding a lot of reasonably fit people seem to get this Terry .As for my database and overlay program if you want to see it starting on the basics, the mmn forum have one running which asks about five main questions . I would just like to get something down as in a few years (ten obviously lol) I may not be able to contribute . At least i would feel like i had done something for the future that might assist in **** dropping this poxy mnd ! As for random treatments herbal or otherwise as individuals there's no control group you just have to get lucky ! Unless someone out there can tell me different? Rays right we ought to have a database to see who's taking eye of newt or drip of spaniel and see if anything seems to slow this down? Marie, if it was 40 yes or no questions over 500 people i reckon we'd start on a usb stick and have room for a game or two? lol But bulky it will be if we managed to drag in the world ! after all your not next door are you ? if you can think it nowadays there will be an app for it. Hopefully a 25 year old I.T. god is writing something for us as we speak ,

Thanks for your replies Colin.

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