ALS?? Please help!

[Achilles84]

thats patrick,25 from germany

need as much opinions as possible.

for the past 3,5 months I experienced muscle weakness of the whole body which seems to be slightly asymetrical.I also have fasciculations mainly on the right leg.Problems with my balance and coordination due to muscle weakness from my perception.I´m also extremly tired and fatigued,no energy.Every movement seems to be harder than it should be.My legs feel stiff and shake under stress.some kind of tremor in the hands and every other movements.

all started 5 months ago with fast irregular heartbeat,extreme fatigue and dizzyness along with headaches and a few very bad panic attacks.heart rate ist still elevated today.always feel cold and tired and my extremities get numb very quickly.

let´s assume I would have ALS due to the symptoms I describe,that means I am already about 6 months or more in the disease.from my feeling and my own clinical view it would match.

on the other hand:

I was evaluated by 6 neuros in the last 3 months with 2 experts,nothing found than a little brisk reflexes.no athropy although I thought there was.

EMG last month (were weakness was already all over along with all the balance issues and fasciculations) showed no abnormalities of any kind.

checked CK enzyme today which should be raised when muscle tissue degenerates.It was totaly normal not even slightly raised.

last neuro visit stated that testing for lyme was positive.whatever that will mean.

So I dont know anymore.rationally evaluated the diagnosis stays a clinical one.So the EMG as well as the CK can not give me some relief of any kind right?! that may seem to drastic but I dont want to raise false hope.

Sure theoreticially if I would already be so far in the disease there should be no way that the EMG would be totally clear.But it is really that indicative?!

And Lyme,should I really even consider that.with symptoms of asymetrical muscle weakness ans fasziculations?!

if anyone knows any other test that I could do to get some status of my nerves and muscles,just let me know.I have a very bad feeling like it´s already over.just want to end this misery one way or the other.

let me know what you guys think.

P.S. tests that have been made included EMG,NCV,LP,CT,Blood Tests,Lyme.

bytheway: recently heard of some kind of spinal tap marker test for diagnosing als.Is this already available in any way?

thx for your help

patrick

[Todd36]

i'm no dr but we have been experiencing many of the same things.  i''ve had widespread muscle twitching and burning for 9 months and the drs haven't found a thing wrong with me.  you can check my past posts for my full story.  i've written it too many times to want to re-write it.  ALS is some scarey stuff, and although it doesn't make logical sense for either of us have it, our minds (at least mine) always takes us back to the worst case senario, which is not good for our mental state.

As far as other tests, I would suggest you ask your dr to issue MRIs of your entire central nervous system to check for MS leaisons.  What sort of Lyme test did you have done?  I was treated for lyme but didn't help.  there is an immune marker in our blood call a CD57, which is usually supressed when you are infected with Lyme, but apparently it can be sensative to other autoimmune conditions.  It would be interesting to have that checked too, and it's only a simple blood test.

getting diagnosed for a neurological problem can take a long time, especially if it is something that progresses slowly.  Having been evaluated by 6 neurologists and them not finding a thing is goodnews, especially with the battery of tests you've had performed already.  

Good luck to you.  Keep in mind that you're not alone.  there are millions of us out there who are going through the same thing.

best,
todd