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bigpiz

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Here's a thread I posted earlier this month. Symptoms arose and I obviously thought worst case scenario. I have an appointment scheduled with my PCP for the 30th. https://www.alsforums.com/forum/do-i-have-als-als/27563-symptom-concerns.html

I have read the stickies. That, coupled with my general knowledge of the body tells me that twitching is generally benign and rarely indicative of something serious. Additionally, I know that typically PALS experience twitching AFTER clinical weakness is identified (or at least a good deal of functional weakness).

I am well hydrated, eat well, have taken a multivitamin daily, etc. However, my legs (calves and quads) have been twitching literally nonstop for four days now. Every second some twitching is happening. I can feel most of them, but they are faint. Some I cannot feel and you can barely see unless under good lighting. I know anxiety can cause twitching, but it would likely be body-wide and not relatively localized to just my legs.

Some people actually have noted twitching as a first symptom. Would it be a good assumption that these people actually had weakness first and simply didn't report it as they had no functional way of assessing it? Like me for example - being a bodybuilder - would I likely notice a good deal of substantial weakness prior to the twitching considering my strength is tested on an almost daily basis? Also, my legs have not been sore after my workouts. Good sign?

Please feel free to lock the thread if the moderators feel it is necessaey after my concerns are addressed. Hate being redundant, especially since you guys are plagued with twitching questions. Thank you!
 
Twitches continuing. Day four. Nonstop in legs. Having some twitching in feet and hands, but essentially in my legs.
 
Bigpiz, since you asked, yes, it's possible that some muscles are affected and cause twitching before the rest fail and you notice weakness. We HATE to tell someone that, because it just feeds your fears, but it's true. That being said, as you've been told already, there are MANY things that could be causing your symptoms and ALS is the very least likely. You should not automatically race to the worst possible conclusion. Unfortunately, people in your situation seldom listen when we say that, but I really hope that you do. I'm glad that you have an appointment with your doctor---that is exactly what you should do. Hopefully he or she can reassure you.

I'm going to ask you respectfully to not continlue posting until after your appointment, and then only if your doctor indicates that ALS is a possiblity. The folks here are well into the battle that ALS brings to us, some are watching their loved ones die during the holidays and others are trying to support them while realizing what the future holds for them. They come here to support each other and have little physical or emotional strength to answer questions from the recently large number of people who that quack Dr. Goggle is pointing our way recently. I'm not trying to be cruel or rude, but your request to close the other thread was appreciated. Please go back and read the answers given there and try to reassure yourself and enjoy the holiday.

Others may answer, but if they don't it will be because they have nothing else to add. Please take that as a good sign. I wish you the very best.
 
Thank you for your reply. I'll refrain from posting, unless it's simply to ask for clarification in this thread or to thank someone who posts for their time.

Part of me is torn between the far too odd coincidence of everything (pessimist) and the randomness of my symptoms (realist) and the chances of ALS given zero family history and my age (optimist).

This morning the twitching is nonstop in my legs and calves still as mentioned, but also in other parts of my body occasionally such as my fingers and forearms, which I think is a good sign.
 
I think I should clarify something quickly also -

These small twitches and fasciculations began almost all at once, in both legs. Wasn't localized at all. "Most" were in the left calf, but even the ones in my quads were all over the place and I am getting them in my butt. Occasional ones in my tibialis (muscle on my shin). Less frequently in my feet, but I have them in my calves literally every second.

Additionally, the afternoon before they started I did a leg workout followed by a night of drinking. I know people are going to read that and automatically assume I'm absurd for assuming ALS over THE OBVIOUS alcohol use. The first day I woke up and my legs were twitching like crazy but I assumed simply dehydration, but after four days of water, foods, vitamins, and Gatorade, I'm terrified. Like I said, seems coincidental given I had symptoms for weeks and suddenly the twitches start. Since the leg twitches are so constant, it's difficult to tell if they are getting worse.
 
You are definitely wearing out your welcome on here. We have answered you and been polite. Please kindly give it a rest and quit posting a new thread. We can't help you. Go to a doctor with the rest of your questions. That is why they are paid the big bucks ! Go wrap some presents or spend times with family or friends. They might appreciate it other then you just thinking about yourself! Go sing Christmas songs loud and clear and spread Christmas cheer for all to hear. Merry Christmas !
 
I will post here just once to support what everyone has said so plainly since your first post on your first thread.

YOU HAVE NO SYMPTOMS OF ALS.

Please honour what you said and do not reply to this and do not post again until you have seen doctors and have some real progress towards a diagnosis. Not one more post to add you list of twitches. You so need to work closely with your doctor as you truly need help which can be given medically.

Closing this thread would be a blessing for all I'm sure.

Sincerely all the best
 
Bigpiz, from your own words,

"Please feel free to lock the thread if the moderators feel it is necessaey after my concerns are addressed. Hate being redundant, especially since you guys are plagued with twitching questions."

Your concerns have been addressed and you ARE being redundant
 
Just wanted to post a (likely final) update on my symptoms/concerns. Hopefully this thread can serve as a reference point for people with anxiety. Also, let it be known I'm posting this from my phone, so I apologize for any grammar errors or such.

Today marks 3 full weeks of fascs in my lower body. As aforementioned, it's predominately in my calves and feet. My left seems to twitch more than my right. The fascs have been noticeable for a 24/7 period still.

I went and saw my PCP back on December 30th. Told him of all my symptoms that I have outlined. He knew of my ALS concerns and didn't think that was the case. He seemed confident. Did no clinical strength tests, no reflex test, and didn't even ask to look as the small twitches. Told me that it was likely my anxiety taking over and also could be related to my electrolytes. He ordered blood work. He offered to refer me to a neurologist after the results came back for my personal peace of mind. I asked him if he would do so under normal circumstances given my symptoms if I DIDN'T have anxiety to which he replied "No way." I'm still having the twitches and tons of perceived weakness in my ankle and calf on my left side. Key word being "perceived." Finally starting to think logically. Been going to the gym daily with no strength depreciation that I can notice. Being a bodybuilder, I'm keen on recognizing these things. Doctor said nothing of BFS (per twitching) and admitted he had only ever seen one patient with ALS, hence his experience was minimal.

Got my blood work back today. Everything was decent. She said thyroid and electrolytes were good. A few things were a tad abnormal such as my platelets, but nothing of a concern. The only thing she mentioned specifically as a "minor concern" were my kindeys. Said informed me that the doctor thought it was a hydration issue. I'm getting blood taken in a week to see. Right before hanging up the phone, I asked her what my CK levels were. I know that PALS have slightly elevated CK levels and mine were exactly that - 281. I went into extreme panic after our conversation, but again tried to remain logical and hypothesize that it was likely to to weight training. Obviously it shouldn't be a huge concern if she didn't bring it up to me.

They have me now attempting l-methylfolate to assist with my anxiety before trying any SSRIs.

In hindsight, the best thing I had done was stop looking online (mainly this forum). It helped with my anxiety a great deal. I was always terrified of my symptom, and still am, but getting away from Dr. Google made everything at least somewhat manageable..

This will likely be my final post here. Thank you for the stay. I received a great deal of support, reassurance, and even tough love - all three of which I seemed to have needed. I'll request that if, after anyone chimes in, to close this thread and let it die. Thank you very much.
 
Bigpiz, to relieve your concerns a little and for others who might be worried, I wanted to briefly relate my experience. Fasciculations don't equal ALS. It's one POSSIBLE symptom of ALS (not all PALS have noticeable fasciculations) and in extremely RARE circumstances it can be a first early symptom, but 99% of the time it is related to something else that is not terminal.

You mentioned you've had fasciculations for 3 weeks. I've had them for 8 months predominantly localized in my calves. They are very visible, very strong, and nonstop, 24/7. Sometimes I'll have periods of weeks where I have really strong fasciculations in other areas, such as my back, face, or arms, and then they will go away, with my calves being constant throughout.

The fasciculations cause cramps, which have impacted my life in a negative way. I used to be an ultra marathon/trail runner but haven't been able to run since last May, when my symptoms started. I need to walk a lot in my daily life and by the end of the day my legs are in serious pain from simple walking. I also have hyperreflexia in my left side. No clinical weakness. I'm on tegretol which alleviates the symptoms a little.

Like you, I was worried about ALS, as my first neurologist mentioned it in passing as a possibility. I've run the gamut of tests and even with all of my symptoms, my original neurologist and three others at two major hospitals in Japan (where I live) diagnosed me tentatively with Isaac's syndrome and said given the clean EMG, no clinical weakness, no progression, and other negative tests, ALS is unlikely.

Believe me, I know it's hard to not worry about it, especially with the Internet around that quickly feeds into our fears and anxiety. But in almost all instances the symptoms you are describing are not indicative of ALS. I think you're taking a good approach to stay away from searching online about your symptoms, which will ease your anxiety and probably your symptoms. All the best to you.
 
Thank you for your reply, Acronyc.

My twitches aren't big by any means, just tiny little flickers and indents. Some I can feel, others I can't. Just very scary nonetheless. I had wished my electrolytes would be off, as that would answer my questions concerning 'why.'

Tons of perceived weakness in my left ankle. I understand that "feeling" weak isn't ALS. Just need to, ultimately, see a neuro and ease my fears.
 
Forgot to mention that I have no cramping or anything whatsoever. No stiffness or anything. Fasciculations are far to weak for that.
 
Thank you. I actually smiled at that, which I needed. I will be visiting a neurologist a week from today. I was not recommended to once for my symptoms, but my PCP thought it would be a good idea nonetheless to provide me with a much needed piece of mind. Until then, I'll keep my symptom questions away from this forum.

I truly appreciate your reassurance to an enormous degree. That goes for everyone on this forum. I'll give you an update after I talk to the neurologist next week. I plan on asking a myriad of questions. My ultimate goal coming back will be to help alleviate all the people with anxiety and such panicking irrationally. I plan on recording the neuro's responses to my questions and post them here for everyone to have another reference point.
 
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