ALS fear again

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ALS fear again

Postby Tb12 on August 18th, 2014, 8:02 pm

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.
Tb12
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Re: ALS fear again

Postby pdodge715 on August 19th, 2014, 3:56 pm

Hey Tb - I thought I'd give a reply because you and I are very similar. I'm 28, male, twitching since late June 2012 w/ other "weird" symptoms dating back to March 2012... so, like you, I'm "2 and a bit" years into it. I get the feeling that my symptoms may have progressed some - see my 1 and 2-year updates in my post history - but I don't know how much of that is perception vs. reality.

Truthfully, the anxiety over these symptoms has never left me. It has waxed and waned over time, but it never goes completely away, and it always spikes back up. Just seeing the letters "ALS" will make my heart start racing. Just today, I read about the inspiration behind the "ALS Ice Bucket Challenge" - he's a 29-year-old former baseball player who was diagnosed in March 2012 and whose symptoms started with muscle twitching. Guess what that did to me??

So, I can relate to your experiences. I haven't had nearly as much testing as you - only 1 EMG (clean), and that was only a few weeks into twitching - but I did see 3 doctors (my GP and 2 neuros) over the course of the first year, did have bloodwork done, and have had several physical evals... all culminating in a BFS diagnosis quite a while ago. At this point, I still carry some concern that I have MS (I'm actually going to see a neuro for that in about a month... first dr visit in over a year); but, despite my breakdown earlier today reading about the Ice Bucket guy, I am generally comfortable with the fact that I don't have ALS. In literally every study I've read, it is said that: in ALS, muscle twitching is almost always preceeded by clinical weakness; when twitching presents first, it is followed by significant clinical weakness in a matter of months - "years" is a term not even discussed with extreme outliers: weakness follows twitching within months.

One of the most common symptoms of BFS/BCFS/CFS I have read about (and experience personally) is perceived weakness. My legs feel literally worthless constantly - they feel like my muscles have been replaced by fasciculating jello. But I drove to work today, have walked around my office all day without assistance, and jogged 1.5 miles up a pretty steep grade last night. And look - now I'm bouncing on one foot! Your strength may not be the best, as you put it, and you may *feel* weak, but I defy the world at large to show me an ALS patient who can lift 20-110 pounds even once, let alone a few nights a week.

So, either you and I are going to completely revolutionize modern medicine's understanding of Motor Neuron Disease when we are diagnosed with ALS over 2 years after the onset of symptoms, OR...we don't have it. As I said, I'm not done working my nerves over just yet despite this realization. My hypochondria has me fearing ALS every now and again just as you have done here; and, as I said, I'm going to get checked out for MS next month. But I think you and I both need to take a deep breath and relax. After all, we are almost 30 for God's sake - we're going to die soon enough as it is without anxiety taking a few years off the back end!

Best of luck, feel free to PM if you want to commiserate.
pdodge715
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