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fatherof4

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Hi,
I am scarred to death and mainly looking for similar stories to know how they usually end...

2 months ago, a nice DR told me I might have a brain tumer pressing against my eye causing glaucoma damage. Two days, after getting this IRM, my twitchting started in my right calve, a week later, it was in my foot and its now everywhere and almost constant in my feet.

I went to see a neuro (who is specialised in Neuromuscular diseases) and went through a complete neurological exam which was fine... Normal reflexes, no atrophy, no apparent weakness... As I was still a bit scarred and was exeriencing a lost of endurance and little muscle pain, he offered me to go through an EMG to secure me (he was sure I didn't have ALS).

I went to my EMG yesterday, the nerve conduction study was good but the neuro found anomalies in my right arm (he only tested my right leg (which was fine) and this arm). For these 2 muscles, he found fibs+1 in four locations, abnormal insertion activity in 1, fasciculation in 1 and reduced recruitement -1 one time.

Prior to this, for my left eye problems, I've been screened for a ton of diseases, blood tests came back normal, no syphilis, ANA normal,CRP normal and much much more... The MRI of my brain also came back normal.

After all of this, he first said it was not ALS but after asking him what could cause these abnormal results, he said that it might be the begining of ALS. He works at the ALS clinic of the hospital. He also said the damage to my arm happened recently (!?) and didn't test the other limbs.

The neuro now wants a lumbar puncture and an MRI of my spine.

2 months ago, I was in perfect shape and now, my arms and legs always feel weird to me... and I feel like I can hold my kids less longer (but this is not an objective proof and it could be caused by anything according to Dr.

I'm 33 years old.

Could it be something else ?
Altough it all started (fasciculations), in my right leg, the emg in that leg came back normal... How can this be ?

Thanks to those who will answer and/or take time to read this
 
Yes! It could be something else! It can always be something else until it can't be anything else but ALS!

It is far too early in the diagnostic process. Your reflexes are normal and you have no atrophy and it seems to me you have no upper motor neuron signs. This would show up in the clinical exam with hyper reflexes, clonus, Babinski and/or Hoffman signs and maybe jawjerk. You have none of these.

An abnormal EMG could mean many things outside of ALS. Your doctor, in my opinion, was premature in broaching the subject of ALS.

ALS is rare, especially for someone of your age. Picture yourself in a stadium of 100,000 other folk. Somebody is about to throw 2 darts into the crowd. The odds of a dart hitting you is 2 in 100,000. In this scenario, the dart represents a diagnosis of ALS. Hope this helps!

One other thing, the further away from the mean age of onset for ALS (about 50), the further away in the crowd you are from the dart thrower, hence, the less the odds of the dart hitting you.
 
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Could it be something else ?

Absolutely. There is a lot of diagnostic territory to cross before a ALS diagnosis could be confirmed. ALS is the one of the least likely possibilities at this time because the results of the clinical neurological exam are inconsistent with ALS.

Altough it all started (fasciculations), in my right leg, the emg in that leg came back normal... How can this be ?

This didn't start with fasciculations. It started with a doctor who has such a poor bedside manner that he starts up and runs his irresponsible mouth before his brain and his empathy are engaged. Unfortunately, you're not the first person we've had here that came under similar circumstances and you won't be the last.

Try to relax and let the diagnostic process take its course.
 
Great analogy Zaphoon!
 
Thank you, Ms. Pie!
 
Many thanks Zaphoon and trfogey.

Zaphoon, as Ms Pie said, your analogy is just fantastic. It gave me a couple of hours of relief Today.

Yes, there is no upper motor signs. Right after the EMG, the neuro did look for Babinski and hyper reflexes but found nothing. If it would be ALS in its early stage (neuro said it might be), would the reflexes be gone (lower motor) or be there (upper motor) already ?

to trfogey: yes you are right, it all started with the "compressive brain tumor" announcement which would have explained my glaucoma. Fortunately (!?), the MRI came back perflectly clear. Could the EMG results in the 2 muscles of my arm be caused by "hyper-stress" (fibs +1 at 3/4 control points in these muscles)?

In the other threads that started Today, some people are wondering about flu shots and other "trigger events" for their symptoms, did somebody ever saw these kind of reactions with the Gadolinium constrat product used in the MRI (heavy metal that goes everywhere including the brain - my kidneys are in good shape).

Could a virus combined to stress be a trigger for all of this (including emg results) ?

I have so many questions...

Thanks a lot.
 
Marta; UR so sweert, hence the mame?
 
Considering this started with problems with your eye--and your neurological exam is normal--no weakness, etc--ALS seems to be ruled out. Did the doctor say "THis might be the start of ALS" or did you ASK him if it could be? There's a phrase in the medical field--I teach it to all my students--cover your a$$. If you asked him--he can't say it isn't 'possible' if you ask him--of course it's possible--about 2 in 200k possible.

Is it likely? Probably not.

Did the MRI contrast cause this: Again, highly doubtful. It's safe if you have adequate kidneys.

Hope you find answers, though
 
to trfogey: yes you are right, it all started with the "compressive brain tumor" announcement which would have explained my glaucoma. Fortunately (!?), the MRI came back perflectly clear. Could the EMG results in the 2 muscles of my arm be caused by "hyper-stress" (fibs +1 at 3/4 control points in these muscles)?

Oh, good heavens. The doctor that I'm referring to with the lousy bedside manner and the uncontrolled motor mouth is your neuro, not your eye doctor.

The fibrillations found in the EMG could be caused by anything that can cause denervation of the particular muscles involved. ALS is is only one of many things that can cause denervation. There are neuropathies, myopathies, and radiculopathies to eliminate along with things like post-viral syndrome, various autoimmune and metabolic disorders and the possibility of simple mechanical injury to the nerves.

Given the fact that he is close to the beginning of the diagnostic process and not the end of it, he should have known to keep his mouth shut until he had real results to report and should not have speculated out loud about any possible differential diagnoses -- though I suspect he may have been encouraged to do so by his patient. .

In the other threads that started Today, some people are wondering about flu shots and other "trigger events" for their symptoms, did somebody ever saw these kind of reactions with the Gadolinium constrat product used in the MRI (heavy metal that goes everywhere including the brain - my kidneys are in good shape).

Millions of people have radiological studies done with contrast media every year and a miniscule fraction of those people will develop ALS. Every person who has ALS has breathed air and drinks liquids containing water, though, so I'd regard those activities with a bit of caution if I were you.

Could a virus combined to stress be a trigger for all of this (including emg results) ?

Why does there have to be a single cause for your symptoms? I ask that question around here a lot, but nobody ever answers it. Please be the exception rather than the tedious rule and give it a shot.

I have so many questions...

I bet. And they are all probably answered in the sticky posts for this part of the board. If they aren't, you better direct them to your doctor.
 
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