I read the stickies I promise! Still nervous...

[WorriedALittle]

I did read the stickies, read huge differences between BFS/AFS/MS and have gone to my PCP and a Neurologist. I still have some questions so I thank you for taking the time to read this long winded post and helping me with my questions. I'll summarize a timeline, then give you a little bit about my life in general and my question. I'm a 29 year old male. Overall healthy.

About 2 months ago I noticed my right hand felt weak (I am right handed). It wasn't objective, just simply felt harder to squeeze things or clench a fist. Like it felt tired when I did it.

Approximately 1 month later (Oct. 15ish) I noticed a tremor in my right hand when moving my arm a certain way. I went to my PCP and he diagnosed it as an essential tremor. It doesn't happen during rest and it only happens during the repetitive movement that I can mimic time and time again. At this time, I searched "shaking and weakness" and obviously found ALS. I fully admit my anxiety went through the roof -- though I have never had a history of that. It subsided when my PCP said "You don't have ALS" after doing a very basic exam and seeing the shaking.

Beginning of November: The anxiety sets back in, I keep reading ALS sites and I get scared. My hand feels weak (not more so, just the same) and my arm is still shaking. At this point I of course start looking at my body 24/7 and notice all kinds of assymetrical things. My right arm is smaller / more defined than my left, when I go to the gym and lift weights my right arm is shakier than my left and fails sooner than my left (I do 16 reps at 20lbs each, its just harder with the right). I know this is not clinical weakness, but it is weakness and that concerned me. At this point I had no twitching or random shaking, just that same essential tremor.

Beginning of November: I talk to my PCP and he says he'll send me to a neurologist. The neurologist see's me a couple days later and immediately says, after a more thorough but still brief (10 minutes?) neuro-exam that I do NOT have ALS. She orders an MRI just to rule out MS and calls me a day later. My MRI is "100% normal and you have no chance of a central nervous disease."

I feel better, for a week or so. I'm still stressed, still looking things up on the internet but not as badly. The weakness in my hand seems the same and appears to arrise from the base of my thumb. I compare the hands all the time, do a million ALS tests and of course get my legs sore and injured and freak myself out -- only to wait a day or two and magically they heal and don't hurt so I relax again.

Present-time and why I'm worried: The issue I'm concerned with is my brand new symptom, full on twitching. I had a twitch, which my neurologist confirmed was a fascic., on the outside of my right elbow (the weaker arm) for the past 3 days. It doesn't twitch when using the arm, just after I relax and wait about 10-20 seconds. It will start fluttering, stop again, flutter for another 20-30 seconds, stop, etc. This lasted 3 days straight. I woke up the 4th day and it spontaneously stopped. The left arm in the SAME SPOT had it though, and the left shoulder. The same exact method... upon rest, it would twitch and shake (enough to see and feel, but not move the arm). That lasted a day, then stopped. The 5th day I essentially had no major twitching. A little one here or there, throuhgout my body which is normal I know, but not in the right arm tricep/elbow area like it had been for the previous 3 days.

Then yesterday hit, the arm in that same EXACT spot has been twitching, again. This arm, specifically, is without a doubt a little bit smaller than my left arm (we're talking less than 1cm though) and is more defined. The area where the bottom of the tricep meets the elbow is the place that continuously twitches upon rest, and it is still doing it now. The other thing I noticed in the past week is that while my thumb doesn't hurt, my pinky does and feels weak. Of course, this caused me to do a ton of pinky excersices and now -- as you can imagine -- it really does hurt, HAHA. I'll ignore that.

Anyhow, my question: Does this sound like ALS to you? Specifically, general weakness in my hand with localised twitching in the ARM of that weakened hand? It is not clinical weakness in the hand, or arm, simply a slight strength difference. Such as, if I held a pot of water with my thumb and index finger in both hands, my right hand would fail a few seconds prior to my left. It would still hold it for 10 seconds, but the left would hold it for 11-12. I have had no twitching in my hand, fingers, palm or wrist. My right forearm is smaller and less defined than my LEFT forearm (which controls grip strength I know), but also has no twitches. The twitching is only happening (consistently) in my RIGHT tricep/elbow area. I do get random twitches over the rest of the body, but they are intermitten and not consistent. Sometimes my eyebrow, sometimes my calf, sometimes the other leg, other arm, or other shoulder -- but we're talking maybe a total of 5-10 a day.

It's my understanding that the twitching generally comes after the weakness of the muscle, as the muscle is dying. This makes me feel like the twitching would be occuring in the hand which is weakened, not my ARM which -- although weaker than my other arm -- is not significantly weaker.

I have another appointment with my neurologist soon and one with a psychologist to try to get rid of this anxiety if that in-fact is what it is, so I am taking the right steps, but I still would like some of your opinions on this. I know weakness accompanied by twitching CAN be ALS, but twitching in a muscle that is NOT showing the signs of weakness? Does that seem like ALS?

Thank you so much, and God bless.

FINALLY: A little about me. I'm a 29 year old male, just got engaged, planning a wedding, work a very stressful job and own a home.

 

[trfogey]

Approximately 1 month later (Oct. 15ish) I noticed a tremor in my right hand when moving my arm a certain way. I went to my PCP and he diagnosed it as an essential tremor.

Here's a diagnosis. What is so difficult to understand about this?

At this time, I searched "shaking and weakness" and obviously found ALS. I fully admit my anxiety went through the roof -- though I have never had a history of that. It subsided when my PCP said "You don't have ALS" after doing a very basic exam and seeing the shaking.

"Very basic exams" can detect ALS. Here's one doctor telling you specifically that you don't have ALS.

Beginning of November: I talk to my PCP and he says he'll send me to a neurologist. The neurologist see's me a couple days later and immediately says, after a more thorough but still brief (10 minutes?) neuro-exam that I do NOT have ALS. She orders an MRI just to rule out MS and calls me a day later. My MRI is "100% normal and you have no chance of a central nervous disease."

"Brief" exams can detect ALS. Here is a second doctor telling you specifically that you don't have ALS.

Present-time and why I'm worried: The issue I'm concerned with is my brand new symptom, full on twitching.

Full-on and widespread twitching is not a symptom of early ALS. By the time that twitching becomes apparent to an ALS patient, weakness has already set in.

Anyhow, my question: Does this sound like ALS to you?

No, it doesn't sound like ALS to me. Nor does it sound like ALS to the two doctors who have examined you. Why does it sound like ALS to you?

I have another appointment with my neurologist soon and one with a psychologist to try to get rid of this anxiety if that in-fact is what it is, so I am taking the right steps, but I still would like some of your opinions on this.

If you are going to ignore what your doctors tell you in favor of your G o o g l e-fueled fantasies, why bother wasting your money and their time with tests that aren't going to change your mind? Let them spend that time with real patients who respect their expertise and appreciate their efforts.

I know weakness accompanied by twitching CAN be ALS, but twitching in a muscle that is NOT showing the signs of weakness? Does that seem like ALS?

No, it doesn't sound like ALS at all.

 

[WorriedALittle]

Here's a diagnosis. What is so difficult to understand about this?

It's definitely not hard to believe, but in situations like these -- anxious people like myself -- look for other methods to alleviate our concerns rather than one diagnosis. I know it's ridiculous, but it's reality.

"Very basic exams" can detect ALS. Here's one doctor telling you specifically that you don't have ALS.

That's good to hear. I was aware that clinical examinations were as important, or more so, than an EMG, but I just wasn't sure about the real-world practice of them. Thank you.

Full-on and widespread twitching is not a symptom of early ALS. By the time that twitching becomes apparent to an ALS patient, weakness has already set in.

I don't have full-on and widespread twitching, unless I'm misunderstanding what you mean by that. I do, obviously, have constant or near constant twitching of my right tricep/elbow area when at rest; But that's about it. I do have random twitches here or there throughout my body as anyone would, though it was this one localised twitch that appeared that made me concerned.

The reason it concerned me was I do have weakness in that limb. It's minor, but it's there. I assume this is not what you mean by weakness associated with ALS by the time twitching is occuring? You mean clinical, obvious, no question weakness? My weakness in that limb is the hand in terms of grip strength and associated pain when doing things with that hand, and if I compare what weight I can lift with each arm -- the arm with the twich in the tricep is without question weaker than the other. I do the same reps and same weight, but I feel like I could do 1 or 2 more reps with the other arm if that gives you an idea of the level of difference in weakness. This concerned me, thinking that it was the "start" of "weakness." Am I incorrect?

No, it doesn't sound like ALS to me. Nor does it sound like ALS to the two doctors who have examined you. Why does it sound like ALS to you?

I guess the only reason it sounded like ALS to me was because of the above paragraph, where the arm -- specifically my right one -- is in fact slightly weaker than my left. This coupled with my hand (thumb/pinkie and overall strength) being slightly weaker than the left hand made me worry that it was the start of "weakness" that is associated with ALS.

If you are going to ignore what your doctors tell you in favor of your G o o g l e-fueled fantasies, why bother wasting your money and their time with tests that aren't going to change your mind? Let them spend that time with real patients who respect their expertise and appreciate their efforts.

I'm sorry if I offended you with my post, I did not intend to. Nor did I intend to disrespect my doctors, as I have the utmost respect for them. I came to this site to help me confirm what they are saying. I realize that it very well may, and as you said it sounds like it is, a mental issue at this point with anxiety. As I said in my original post, I am addressing that as well.

No, it doesn't sound like ALS at all.

Thank you for your time, I'm sorry if I offended you during my original post.

 

[trfogey]

The reason it concerned me was I do have weakness in that limb. It's minor, but it's there. I assume this is not what you mean by weakness associated with ALS by the time twitching is occuring? You mean clinical, obvious, no question weakness? My weakness in that limb is the hand in terms of grip strength and associated pain when doing things with that hand, and if I compare what weight I can lift with each arm -- the arm with the twich in the tricep is without question weaker than the other. I do the same reps and same weight, but I feel like I could do 1 or 2 more reps with the other arm if that gives you an idea of the level of difference in weakness. This concerned me, thinking that it was the "start" of "weakness." Am I incorrect?

Yes, you are incorrect. The normal clinical neurological exams done by your doctors would have detected the type of weakness that ALS causes. Along with weakness, ALS causes problems with muscle tone and with reflexes. The process that causes the clinical weakness -- denervation of muscle fibers due to motor neuron damage and death -- also causes the changes in muscle tone and reflexes at the same time, and it is the combination of the three symptoms that points back to a motor neuron disorder such as ALS.

Obviously, your normal clinical neurological exams demonstrate that you don't have any of these three problems, because you would not have gotten a "normal" result if you had any of those problems. Not one, much less all three neuromuscular abnormalities. That is why your doctors can tell you that you don't have ALS so definitively after only a brief hands-on exam -- because you don't have the necessary and definitive set of symptoms that ALS would produce in the area of complaint.

If you truly understood how ALS works, like your doctors do, you would know this. That's what makes your blowing off what your doctors have said so laughable. They are speaking from a position of medical truth. You are disputing that truth and you don't even understand the basics of the disease you are claiming to have.

I'm sorry if I offended you with my post, I did not intend to. Nor did I intend to disrespect my doctors, as I have the utmost respect for them. I came to this site to help me confirm what they are saying.

And here's the root of your problem. You are looking for validation in the wrong direction. Why would you think that a group of anonymous strangers on an online bulletin board would know more about diagnosing ALS than a well-trained and experienced neurologist? Do you see how screwed up that logic is? Besides, you already have a sufficiently validated opinion -- that of your PCP (you don't have ALS) whose opinion was validated by that of your neuro.

If you still have any concern that you have ALS at this point, it's because you have too much stubborn pride to admit that you did not learn enough about ALS before you decided that you have it. It's not about anxiety any more -- it's all about having to admit that you don't know as much as you thought you did and that you flunked Internet self-diagnosis 101 in a big way -- and your ego just can't stand it.

I assure you that you'll start feeling better if you stop sawing the limb off behind yourself. But first you've got to admit that your doctors know more about finding out what's wrong with you than you do, and that appears to be a pill too bitter for you to swallow right now.

Good luck to you.

 

[WorriedALittle]

Thank you for your insight / information.

 

[10starr]

You mentioned in your posting that you lift weights. You might try giving that a rest and see if the twitching in your elbows will subside. You may be overstressing your triceps and then getting anxious about a neorological reason when it's simply that you worked out a little too hard.

Hope this helps and that you can calm down about your fears.

10starr

 

[HelenL]

Anxiety can do a lot of strange things... your doc said you don't have it, your neuro said you don't have it... you're incredibly lucky, you DON'T have ALS!

My Mom has essential tremors and I attributed my symptoms to that a well, but you know what? She can walk just fine, just can't hold a teacup (or anything) without her hands shaking. It's been decades since her diagnosis, and she walks just fine. Me? Not so much.

Please stop thinking that your twitches or minor atrophy have anything to do with this, there are many other reasons for it... (personally I would suggest taking some – not too much – Vit. D/creatine/Vit B12 to see if that helps a bit)

Good luck, and have a wonderful life with your fiance!

 

[notme]

Honestly it sounds to me like you have a pinched nerve. I'd see a hand specialist to see if it's the ulnar nerve trapped at the elbow.

Even something in the neck could be causing arm symptoms... So could Parkinson's when you toss in shaking. The point is that it doesn't sound like als with the info you've posted.

Self testing is just plain useless at best...and a bit neurotic at worst. Stop it, lol.

 

[WorriedALittle]

I had another appointment with the Neurologist today, which had already been prescheduled prior to my original post.

I voiced my concerns and she did see brisk reflexes -- though they were equal in both legs -- and due to a huge dent in my right quad she ordered an EMG. She seemed to ask a lot of questions regarding my twitching, which I informed her did not happen on that leg, but she still ordered an EMG.

In the end she left saying she thought it all seemed fine, as both reflexes were equal -- albeit it slightly fast -- and that there was no weakness in the leg itself. No date scheduled for the EMG, but I guess that will shed some light, or mud, on the situation ey?

 

[Kathylund]

Really, don't freak out. I did that, totally freaked myself out to the point that I would lay in bed and cry. I have brisk reflexes, I came home and tested my kids (semi adults lol) and you know what? They both have brisk reflexes also. I also have a "dent" in my leg. I have been to my gp, 2 neuros and 2 ALS specialists, because I would not believe them because I had convinced myself that I did have it. I had 3 emgs! all clean. Really go look at my previus posts. There are some very smart and caring people on this board and believe me, they know there stuff, they are living it and are kind enough to try to help us and try to eliviate our fears. Get your EMG, but please, believe the drs. I wish you the best of luck and let us know how things turn out.

 

[ScarlettK]

Sis had 3 EMG's and each one was proof positive of ALS. She saw 3 different doctors, two of which sent her to Vanderbilt for the final diagnosis. I don't think the other two doctors wanted to deal with the problem because they did not specialize in ALS. Sis had foot drop and hyper-reflexia along with muscle twitches and weakness. Each of three doctors did basically the same office tests with emphasis on reflexes the most. She did like most people and researched her symtoms after hearing from one doctor possible MS or ALS. She was so scared much like you. But bottom line... EMG's told the tale. No matter how much time goes by and the anxiety of waiting... a doctor has to diagnose. No one else can validate a diagnosis so that the proper preparations can be made for treatment and care of any disease.

I know that I am only a part-time care giver for my sister, but the entire family is affected by what this disease is doing to my sister. It is not pleasant to say the least. But after everything is said and done, it is how one LIVES life that truly matters. Relationships are most important. Cherish every moment with those that you love. Tell them you love them and show them.

Worry is a waste of precious time for any of us. I pray that ALS passes you by. God bless you.

Kaye

 

[WorriedALittle]

Thank you all.

I had my EMG today and they checked my entire right side. They said it was normal, saw no active denervation in any muscle. They did see that a nerve in my forearm had been damaged and repaired at some point on its own, but nothing active at the moment. All muscles were "quiet" at rest on the machine, sounded like static at best.... They of course made noise when flexing.

She ordered a neck MRI to see if a nerve was trapped somewhere but said "I see nothing that points to ALS." I assume because of the lack of fasics and lack of active denervation. The fact that there IS a damaged / repaired nerve does concern me, but from what everyone tells me and the Dr said, this is not indicative of ALS and in fact very common?

Now it's off to an MRI to make sure the neck is good, then the psychologist to make sure I don't stress myself into oblivion again.

 

[Al]

No ALS. Best XMAS present you'll ever get.

AL.

 

[MikeH]

I had a similar EMG done on my left leg (can't flex one of my calf muscles anymore - also feels a bit weak generally). My EMG came back showing no signs of active denervation but mild to moderate chronic denervation in a particular nerve related to a spinal disc. My neurologist suggested this could be an old injury of some kind relating to the disc. I messaged Wright with my full EMG report and he confirmed that no active denervation basically means no ALS. I presume this is because the disease process would be constant from onset. That is, denervation would be active until the muscles were completely denervated and atrophied. So I'm not worried about the EMG result, and I don't think you should worry about yours either.

Merry Christmas!