Should I Still Be Worried

[darrellacoustic]

My symptoms began in October of last year, with all over twitching and numbness/tingling on my left side. Shortly after, the tingling went away but the twitching persisted. The twitching became even more widespread, but my left side seemed to be slightly more affected. I saw my primary doctor near the end of October who did every blood test imaginable and all came back clean, aside from a slightly lower blood iron level. He said it was from an iron defiency and told me to take iron supplements.

A few weeks past and no change, so I saw another doctor who told me , after viewing my test results from the previous doctor, that my iron levels were barely below normal and that they wouldn't cause my symptoms.

I then made an appointment with a neuro (on my own). I saw him near the end of November. He did all the strength and reflex tests and said everything was normal and that I had bfs which I knew all about. But he scheduled an emg anyway.

So for a few weeks every thing was cool, and while I didn't stop twitching I did begin to ignore them. Because of this I skipped my emg appointment because I wasn't worried anymore.

Then one day, my legs began to feel like they were crawling, at all times, and like my knee reflexes were constantly being tickled. This set me back in a panic.

I saw my main doctor again, and he tested my reflexes and said all was fine. I began to ignore it again. Then I began To get cramps more than usual. Usually 3-5 times a day. Nothing major, but cramp like feelings. I also noticed that anytime I flexed a muscle for too long, I would cramp up.

I then began to have tremors, or an internal vibration feeling that is always going, even now. Anytime I sit still I can feel my legs shaking, but I believe it's internal as no one else can feel it.

During the time since this began in October I've had cycles where the twitches are much worse, borderline seizure type. I rescheduled my emg, and in February, I had an emg on my RIGHT side (my twitches are still much more common on my left side) but I have twitches in the areas that were tested, and from my understanding this means that something should have showed up on emg if something was wrong. He said that it was a normal study and that was that.

Fast forward to now. I haven't seen a doctor since the emg in Feb, and I thought I would be able to move past it. I feel like my twitches have progressed in severity since the beginning. I still cramp, but it's random and most days I don't cramp unless I provoke them by say, pointing my toes.

The symptoms I've having now, aside from what I've mentioned.

Still twitching, everywhere, even top of head and eyelids, stomach, back, elbows, knees etc. EVERYWHERE. They are mostly random, but I would say on average that every 5 minutes or so at least one muscle will twitch, usually around a minute before stopping. When this began, no two muscles would ever twitch simultaneously, but now it happens quite often. The left side of my body is nearly always affected first. About two months ago I had my first eyelid twitch, on my left side. It was pretty continuous. About a month ago the right side started, but it is much less often.

If I half smile, the left side of my face will tremor.

I get joint popping everywhere. Before I started twitching, I almost never had joints pop except for my fingers and toes. Now anytime I stand up from sitting both knees pop. The popping is worse on my left side. My left leg also FEELS different but as far as I can tell everything seems normal. I can do everything pretty much equally on both legs.

My main question is, is it even worth spending the money to go back to the neuro? I had a clean emg a few months ago and I've read many things that say I should be good, but there's always the odd story of people with als having clean emgs initially.

Would having it on the ride side only make a difference? I was having plenty of twitching on that side already when I had it.

I still have no weakness, that I know of, and I've actually gotten stronger in my upper body and gained weight since the beginning of symptoms.

I'm 27, but I had a grandfather who died of als. My father however, did not have it and lived to be 82 before dying of a heart attack.

I ask mainly because, it's a $250 copay for me each time I see the neuro, and I don't want to go unless I absolutely have to.

 

[Atsugi]

Hi Darrell, I read all your posts and I have no new news for you. You don't have ALS, but you already knew that.

Two additional things: First, you either didn't read the sticky post at the top of this subforum, or you ignored it. Your answers are all there. Second, if I thought I might have a terminal disease, the $250 copay wouldn't bother me at all.

You had a clean EMG. That's it. To top it off, you have no weakness, as determined by an expert. All this talk of twitching and buzzing and such is just weird stuff that the human body does to entertain itself. I really wouldn't worry about it. You're probably going to die at 82 of heart disease.

Good luck. Don't forget to enjoy life while you're living it.

 

[Clearwater AL]

Here's re-post of my post to you back in January,

Darrell, as you wrote,

("First of all, I would like to say that I have been a lurker here for a few years now,")

That just about says it all.

Your 33 paragraph rambling essay on yourself is proof, without a doubt, you missed one thing in your years of lurking... The Sticky by Dusty7.

Finally, as you wrote above,

("I still have no weakness, that I know of, and I've actually gotten stronger in my upper body and gained weight since the beginning of symptoms.")

Quit lurking because it's become jerking...

 

[darrellacoustic]

Hi Darrell, I read all your posts and I have no new news for you. You don't have ALS, but you already knew that.

Two additional things: First, you either didn't read the sticky post at the top of this subforum, or you ignored it. Your answers are all there. Second, if I thought I might have a terminal disease, the $250 copay wouldn't bother me at all.

You had a clean EMG. That's it. To top it off, you have no weakness, as determined by an expert. All this talk of twitching and buzzing and such is just weird stuff that the human body does to entertain itself. I really wouldn't worry about it. You're probably going to die at 82 of heart disease.

Good luck. Don't forget to enjoy life while you're living it.

First of all, thank you for taking the time to answer. Yes, I have read the stickies, many times in fact. The truth is, it's a hard fear to shake, and it doesn't take very much searching to find people whose onset contradicts most points to the sticky. I realize how damaging it is to my psyche to purposely search out these stories, but a lot of times I have stumbled upon them when trying to reassure myself that I am fine, and then begins the spiral again.

I'm also very familiar with bfs, and I hold tight to that diagnosis, but I do worry that it may have been premature. I do know that this is a very real possibility, but it's very hard to accept that nothing is wrong with me when I am constantly experiencing very very disturbing and disrupting symptoms. I know my body, I've been a bodybuilder for many years, so I know when something is off, and it has been progressively getting worse. Maybe not in a weakness sort of way, but in an unsettling and increasingly active type of way.

At first, I could ignore the symptoms when I was busy or not stressed, but now the shakiness is always there. Anytime I stop for a second and focus, it's still there. Lately the shaking has moved to my back and chest at certain points. The best way to describe it is a steady electric current flowing through my body.

I don't even know if this is a symptom of als, but I know it isn't in my head and it's very hard to accept as "just one of those things".

The whole thing has driven me crazy. Until 8 months ago, I was an extremely positive and stress free person, and now the opposite it seems.

 

[Clearwater AL]

Darrell... you're being ridiculous so here it is point blank,

As you just wrote above,

("I've been a bodybuilder for many years.")

Now start working on your brain... you've left it behind. With the same dedication you have given to your body... give a few moments of dedication and re-read (slowly) the Sticky by Dusty7 and re-read Atsugi's replies.

 

[darrellacoustic]

Here's re-post of my post to you back in January,

Darrell, as you wrote,

("First of all, I would like to say that I have been a lurker here for a few years now,")

That just about says it all.

Your 33 paragraph rambling essay on yourself is proof, without a doubt, you missed one thing in your years of lurking... The Sticky by Dusty7.

Finally, as you wrote above,

("I still have no weakness, that I know of, and I've actually gotten stronger in my upper body and gained weight since the beginning of symptoms.")

Quit lurking because it's becoming jerking...

I understand, and I really do apologize. The truth is, about 3 years ago I had a similar bout that lasted about a month, and I learned about this site then. It went away, and I stopped reading the site. This time though, it hasn't gone away and has only gotten worse, at least it feels like it has. I pray that the same happens this time. I will read you a post from my Facebook from around 3 years ago to show my sincerity.

"I recently had a slight health scare, and I decided to google it. Horrible idea. For a while, I thought I was dying, but thank God I don't believe I am. After reading posts from a certain site I immediately felt heartbroken. Not because I think I have this disease, but because there are people on there who truly are dealing with this terrible fate, and they take time out of their day to reassure people like me. I'm sorry Lord for worrying, and please send my love and prayers to them."

I only wish this would stop, so I could stop worrying again.

 

[nebrhahe53]

> Don't forget to enjoy life while you're living it.

The best advice Ive ever seen. Wish I'd taken it to heart sooner.
You do realize you are hanging around with a bunch of people who will be dead in a year or so...we just dont have the time left to waste on people who want to give themselves terminal diseases.
If you want to worry about having one, at least pick one with some percentage of a cure rate. Start at 1%, thats 1% more than we have.
More importantly, find yourself a life while you have a body that can support it. your time will come....in 5 or 6 decades. Spend them well, help people, love well, give back, then you will have left something lasting.

 

[Atsugi]

No doubt you're sincere. The first step to getting this to stop is to stop hanging out with people who are dying of ALS. We really aren't prepared to help you find treatment for whatever it is you have.

 

[darrellacoustic]

I've had some new developments and I was wondering if you could weigh in please.

The last week, my twitching has increased 10 fold, despite being on anxiety medication for the last few days. I saw my gp, who just told me he though I had a chemical brain imbalance, and prescribed me pills. No exam or anything.

So, that's fine and all, but the twitching and cramping has gotten way worse. Yesterday, my left shoulder went crazy all day long, erratic severe twitching. Today, my left arm feels "dead", like I got punched really hard there and the nerves were damaged. My left arm below the elbow feels slightly numb, especially in the wrists and lower hand.

I'm trying to be rational, and say that I've read that als isn't about feeling, but my whole left arms feels extremely off, like dead weight. Though, it seems to be just as strong as the right.

Aside from that, I've also been having weird mouth and throat problems. I feel like there is a turtle neck around my throat all the time now, and my mouth feels heavier than usual. No slurring of words or anything, so I'm at a loss.

Do you have any ideas? I've also been eating gluten-free for about a week and a half now to see if I improve, so is if possible that my symptoms could be a sign of withdrawel? I'm not even sure that I was gluten sensitive, so this could just be wishful thinking.

 

[Atsugi]

Darrell, you don't have ALS.

The people here posting replies to you are dealing with with an incurable, terminal disease that paralyzes all the limbs, neck, torso, and finally the patients die from the inability to breathe well. They don't have long to live. The caregivers are exhausted; giving care to a loved one with ALS is really the hardest job I've done.

Many of our people here operate their computers with mouth-held or head-mounted pointing devices while their limbs hang useless. We all want to help people with ALS, and it takes a long time to read or reply to each post.

You know you don't have ALS. You don't belong here, using up the time of people with only a short time left to live. We're not doctors, so we can't diagnose you. But we know ALS really well, so we can definitely say you don't have it.

Go now, find a general health website to post on, if you like. Only your doctor can help you. It's rude of you to use up our precious time. Good luck with your doctor.

 

[affected]

Darrell, like a bull in a china shop you have just come barrelling back in to exclaim about your next bout of anxiety.

Did you first sit and carefully read the reply from nebrhahe53 on the 6th? He really has ALS, go read his threads here and see how much he is suffering, then log off this website forever.

Honestly mate, get professional help, we have done what the sticky at the top of this forum says we will do.
Please note well:
1. The sticky is our official position and it told you what was what regarding symptoms - don't argue your symptoms against that.

2. You have asked, you have been answered it is NOT ALS, so it is time for you to politely move on. Do not just log on here in a panic and type out whatever is going through your head.

All the best working with doctors

 

[Green Queen]

Wow. I don't like to judge people who have symptoms of any sort, but I must admit these DIHALS threads are becoming way too common for no ALS reason at all, and I haven't even seen a drop in the ocean!
I ignored my symptoms for two years, never thought to bother anyone on a forum about foot drop (didn't even realise I had it!).
Makes me wonder, if everyone can navigate the internet to find this site, why can't they use it to find a doctor?

 

[Atsugi]

why can't they use it to find a doctor?

Good point!