Thomas, I'm sorry you saw a Neurologist who would say that ALS is a distinct possibility so early in your diagnostic process. (The first visit and your initial Neurological tests were all normal, no signs of atrophy.)
Then you found a psychiatrist, just as irresponsible as the first visit Neurologist, when you wrote...
"He examined me briefly - looked at the fasticulations and verified the clonus in left ankle and said very matter of factly that I had ALS."
Very questionable words... "He examined me briefly.." As Nikki said, "That is ridiculous."
In simple words... he/she needs a psychiatrist.
I hope the next doctor you see is a real doctor and you clearly hear what he/she may tell you.
Tom as of yet you dont have the hallmark symptom of als wich is clinical distal weakness or bulbar involvment. These two fellows who label themselves doctors and who just infused the sums of all fears into you are irresponsible folks. I mean, a psychiatrist looking at fasciculatons and comming up with an als diagnosis like a sad magician pulling a rabbit out of a hat is utmost ridiculous.
Focus on the fact that theres no weakness noticeable right now which pulls the odds in your favour big time.
Twitching is irrelevant, just ignore it. Practice deep breathing and relaxation. It will help with anxiety.
Hang in there brother.
Had my EMG today which found one slight abnormality in my left foot but doctors conclusion was not suggestive of ALS. Next move is multiple MRIs to determine why I’m hyper reflexive ( Dr said it was pathological) and the clonus which I assume is just an extreme form of hyper reflexivity. If it’s not lower motor related it must be upper. Still searching for my diagnosis.
I sincerely want to thank everyone that took their time to respond. It was very comforting. All of you will be in my prayers. Thanks Tom
It appears as if my goodbye and thank you post was premature.
So I go to my PCP last week for an unrelated matter and he tells me he spoke to my neurologist who says I have a 5% chance of having ALS. I was stunned having been told my tests were normal and I have no idea of how he comes up with a percentage.
I got a copy of my results and my EMG report says "EMG study normal except for fasciculation potentials in the bilateral gastrochemius muscles consistent with benign fasciculations." Sounds good until the report continues with the NCV findings which show all normal but for a "borderline prolonged terminal latency in the left peroneal nerve and mildly slow sensory nerve conduction velocity in the left sural nerve." The report concludes "Today's study is not suggestive of diffuse denervation process such as ALS. The mild abnormalities noted on the nerve conduction study are of uncertain clinical significance."
My previous clinical exam has shown clonus in right ankle, fasciculations and hyperreflexia.
I'm with Karen -- that note makes no sense to me. I don't see any reason to suspect ALS, and if there were, we'd be talking about >5% probabilities. Sounds like a CYA note to me and I'd not worry about it. You are on the right path to get more information.
Thanks everyone - I guess my assumption was that a clean EMG = no ALS was an absolute at that point in time. Didn’t realize that’s not the case. Just bummed that ALS is still a possibility albeit a small one. Tom
Here's a lighter side... I've played a lot of poker in my life. Below is the ranking
of poker hands.
Royal flush. A, K, Q, J, 10, all the same suit.
Straight flush. Five cards in a sequence, all in the same suit.
Four of a kind. All four cards of the same rank.
Full house. Three of a kind with a pair.
Three of a kind. ...
If I was dealt a Straight Flush and decided to fold in fear one of the
five other players might have the Royal Flush... that's playing in fear
of 5% and I would have missed out on a pile of chips (money).
If you keep playing that 5%.... you'll lose more than money.
A big piece of your life... you've folded to anxiety.
Update - MRI came back normal. Clinical exam still shows hyper reflexes and clonus. Neuro now says 20% chance of ALS. Wants to redo EMG in 90 days. Said to look for weakness and swallowing issues. Gonna be a rough and anxiety filled 3 months. Thanks for listening. Tom
20% chance? Seriously, I am skeptical of a neuro that speaks in odds in a situation like this. It doesn't make sense. You simply have not described ALS symptoms. It still sounds like a CYA situation to me. You have been chasing this diagnosis for a while now. You have two choices, let the next three months be 'rough and anxiety filled' or live your life. You don't have any functional difficulties, so I would say spend the next few months enjoying, worrying won't change the outcome regardless. If you're talking odds, an 80% chance that it's NOT ALS is something everyone on here would wish for.