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ALS fear again, anyone shed some light

PostPosted: August 18th, 2014, 6:43 am
by Tb12
Hi guys,
i am a 29 year old male. I have now been twitching everywhere, cramping, tremors, slurring of speech on occasion and biting tongue, pain in joints, cramp feeling like pains all over body in calves a lot, for 2 and a bit years now. i can say that i have some perceived weakness, especially in hands and legs but no weakness diagnosed by any dr's accept my physio said my hand strength was not the greatest, however all neuro strength test have been fine.

i have had a total of 5 emgs, only limbs, never tongue. first emg was inconclusive and suggested mild chronic denervation, the next 4 were completely clean. no neuologist i have seen have suggested Als but couldnt give me a diagnosis.

i have not seen a neurologist for 8 months or more and just got on with life, i have gone back to the gym and am lifting weights and doing cardio and whilst my strength is not the best i still am able to lift 20 to 110lbs a few nights a week and what not so my body seems to be functioning fine besides all the ongoing symptoms.

I guess im just after some advice and maybe reassurance from this board. Is 2 and a bit years of symptoms weaning and changing yet progressively still there and pretty much the same in nature a good sign? that if it was something sinister that after 2 years plus i would have tell tale signs of something like MND?

i just saw a AFL football player on the news say he was not diagnosed unitl 9 months from start of symptoms and his symptoms were him having trouble pegging out washing, just frightened me as im sure its happened to other people here.

any comments are appreciated.

Re: ALS fear again, anyone shed some light

PostPosted: August 19th, 2014, 2:19 am
by J4son
Tb12 wrote:i just saw a AFL football player on the news say he was not diagnosed unitl 9 months from start of symptoms and his symptoms were him having trouble pegging out washing, just frightened me as im sure its happened to other people here.

any comments are appreciated.


It can take more than 9 months to be diagnosed, sometimes more than a year, but that doesn’t mean a year without symptoms. People usually have a lot of progressive symptoms, but due to the fact that ALS is a diagnosis of exclusion it could take some time to be diagnosed. Obviously in his case it seems his symptoms started with true weakness and not just twitching. 8 months of just twitching with no obvious, true, clinical weakness is not ALS. How many times should it be repeated? I truly think BFS should be incorporated into the DSM as an obsessive anxious disorder and be treated according to that. 5 EMG, 2+ years of symptoms and still scared to death is not a neurological problem anymore…

Re: ALS fear again, anyone shed some light

PostPosted: October 20th, 2014, 7:45 pm
by Jayden
Any updates?