Should I Still be Worrying about ALS?

[tarrigo]

I have posted before, and am still worrying about having ALS.  I am a 25 year old male experiencing symptoms of muscle twitching, perceived weakness, and what I think is atrophy of my right hand.  The twitching is all over my body, but the weakness is only bothering my right leg and right hand.  I have been to my GP and a neuro.  My neurological exam was normal, with normal reflexes and toes going down on the Babinksi test.  I had an EMG of all four limbs, my abdomen, and my tongue.  This was done approximately 2 and half months into my symptoms.  My EMG was totally clean, and my neuro, GP and the tech said that I do not have ALS.  Since my EMG, which was a little over two weeks ago, my twitching remains and my hand and leg feel as if they are getting weaker.  I have noticed what I think is atrophy between my two middle fingers on my right hand.  This is apparent when I make a fist.  I noticed it a little before my EMG but now it seems more pronounced.  Wouldn't the EMG have picked up on abnormalities once my symptoms started?  Wouldn't the EMG have picked up on changes prior to atrophy?  Lastly, was my EMG done too early in the process?  I am scared and am looking for reassurance.

Tony

[4t1074]

Really, your at a point where you are in the waiting game.  Basically wait to see if it gets worse.  I'm in the same boat. You do need some depression / anixety meds, so call your doc and get on them.  It will help you cope.  This has consumed my life, marriage and happiness, don't let it consume yours.  Really, if it is ALS, of which it is likely not, esp. at your age, there is nothing you can do, literally nothing except eat right and small excercise, so start now.  It will do you no good to see other neuros, have more EMGs, you'll just be wasting money and still have no answers, i've been through it.  It's more than likely stress and you are now examining your body closer than ever, feeling every little twitch, every little imperfection, etc etc.  You should also make sure you have a full workup of MRI's, bloodwork and esp. a full lyme workup and heavy metals test. Your not alone buddy!

[tarrigo]

But doesn't a clean EMG and clean neuro exam pretty much rule out ALS?  My neuro, GP and the tech said I have no clinical or EMG signs of ALS?  I forgot to mention that I have had a full thyroid work up, CPK workup, MRI of brain and C-Spine.  Everything is normal.  I think I have pretty much exhausted all possible tests.

Can I trust the doctors.  My neuro said that prior to my EMG he was 99% sure I didn't have ALS, but wanted to do the EMG because he thought it would be therapudic for me.  Wouldn't the EMG have found something, since I had symptoms present?

Tony

[tarrigo]

I forgot to mention that my EMG was performed in all four limbs, abdomen and tongue.  That is about as exentsive as you can get.  

Will all basises covered...I should be okay right?

[4t1074]

Yes, your okay, don't let this get the best of you.

[tarrigo]

It seems you have some knowledge of the disease.  With that in mind, wouldn't an EMG pick up on subtle abnormalities, especillay two months into symptoms.  Can anxiety cause weakness and stuff like that?  I bet it can, but these symptoms are a pain in the but.  Achy hands, all over twitching, feel of weak legs.  I thought I had atrophy before my EMG, so wouldn't the EMG have picked up on the atrophy?  Isn't atrophy after the weakness occurs?

In your honest to god opinion, and I know you are not a doctor...do I have ALS or not?

Tony

[tarrigo]

Anyone else with any input on my tests, etc.????

[cat457]

I started experiencing strange symptoms 4 months ago, so I googled them and a list came up with all kinds of maladies, etc. However, after several trips to GP and Neurologist, and having neuro exams and a MRI, they all came up negative.
I would trust the tests that were made on you, and try to stop worrying the worst case scenario, ALS. But continue to challenge doctors for a diagnosis and explore  whatever is going on with your body.  Anxiety and worry can also do a number on your body.  I know, cause I too, have worried about ALS, MS, etc...
Take care and hope you feel better.

[ihatepvc's]

What I want to know is the atrophy something that only you have noticed, or has the doctor confirmed this? Have you asked other people if they can see a difference? I ask because I know the mind tricks this fear of ALS can play on you once you know all the symtoms of ALS. If only YOU can see any atrophy and no one else, sounds like there's not a thing to worry about. If there is in fact atrophy, you may want to ask for a repeat EMG in six months or so. You are hyper focusing on the way your muscles look right now and noticing every little variation so take care not to see things that aren't really there.

[cat457]

Tarrigo,
We are all going to die someday to whatever affliction, be it disease, accident, nuclear war--who knows.  But I think you are going to be here a long, long time.  So, chill Dude!  You're too young to be putting yourself thru this.  First off, ALS is a rare disease. I believe only 200,000 are afflicted with it. These are mostly working class, middle-aged men.