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Cubanborn87

Is this ever going to stop? (ALS Fear)

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Hi, maybe a few of you recognize my username. I have been on here very active, even though in the last few months I have taken a break. I think last time I posted was in late March. I tried to post a few weeks ago after my follow up with my neurologist, but the board was offline and then I went out of the country for  2 weeks. For those of you that don't remember me or haven't seen me post before. I have had muscle twitching for a little bit over 2 years now. I had a clean EMG back in February, I keep thinking I have atrophy throughout the left side of my body and ever since November of last year when a bunch of new symptoms showed up, It has been very tough for me. That's when my tingling and numbness started, even though most of that has gone away by now.

 

So, 4 weeks ago I had my follow up with my Neurologist. You guys know how I have been second guessing him a lot, because a lot of the stuff that he tells me does not add up to me. I showed him my hand where my veins pop out more and how my wrist bone is slightly more profound than my right hand  I also showed him the clicking on my left thumb. He did not say much about that. Honestly, this appointment was a disaster for me. you guys know how I have been convinced that I have ALS since last November and I still have no answers. Anyways, then I showed him my calf and how one I thought was smaller than the other he did not say anything about that either. But, then I did this test in front of him. I told him to get behind me and to focus on my calf and compare one to the other. I got on my tip toes that way the calf would raise and stick out and I asked him. Do you see the difference? He said well one looks a little stronger than the other lol whatever that means.

 

Then he says, people that have ALS don't pass the EMG. You passed it, I told him that I was shocked when I passed it. Then he says if you had ALS you would have to be in very bad shape now. Meaning when my twitching started 2 years ago. I notice how he no longer says that he is 99% sure I don't have ALS, like he told me on my first visit. Now is almost like he is second guessing himself. I just think he might be a bit inexperienced. So we finally make it to the test and my strength is still normal. Nothing shows up on my strength test and then surprise. I have hyper reflexes all of a sudden. I told him well that wasn't the case last time around, and he says yeah but there has never been a difference between one leg vs the other. Is that how hype-reflexes work? According to him it would only show on the problem side, ummmm, i really don't know about that.

I also told him about the involuntary jerks that I get during the day and how that is new and it's really worrying me. He recommended an MRI, which is scheduled for this Saturday.  So that is next, he also said let's see how everything progresses and we might do a second EMG this fall.

 

Now, my friend sent me an article this morning about a Doctor that thought he had ALS, but did not. My friend was trying to make me feel better, but there is a reason why I don't do research anymore and don't look up ALS anymore. It never works in a positive way. The article covered various aspects and told the story of this Doctor that thought he had ALS, but did not. But in the article he mentioned how when he was really in the hole. He read this post by this lady about her husband and how he kept feeling weaker and weaker. He passed the EMG but then 6 months later failed it and it was confirmed that he had ALS. I couldn't help but see myself in that guy. I am so hopeless now, at least the prozac is working and I am able to function normally unlike back in the winter when I couldn't even sleep. At this point I have lost all hope, I will take the MRI this Saturday, which I am not worried about and then wait it out and wait for my 3rd appointment in September. It's funny how he always wants to see me 3 months later but then I go to the secretary and tells me they are booked for 5 months lol Just great.

I guess the second EMG is crucial for me at this point, but I have to wait until then. I know a diagnosis is a curse and I should not be seeking it. But at this point it has been a long journey with no answers and things are not improving by any means.

 

I wonder how often the EMG false negative happens, in the story about how he had to take a second one 6 months later. Does that happen often? I thought EMG is supposed to be pretty accurate, even though of course is not perfect. Nothing is. But I find it puzzling how I always read about people getting a second EMG 6 months later.

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The only thing crucial for you at this point is therapy. You need a therapist not a neurologist. If you actually want to get over your anxiety you have to quit the reassurance seeking. To be honest I think your neurologist is being very irresponsible continuing to see you when you do not have a neurological condition. 

Twitches are normally. Everyone has them. Non anxious people just don’t notice or care. Bodies are not symmetrical. It is totally normal to have differences between left and right side. 

You have been cleared by a neurologist. Now you need to learn to trust that. 

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I do remember you cuban! I'm sorry but you sound positively miserable with this whole thing.

Sadly you've wasted 2 years of your life obsessed with a disease that you do not have. That makes me feel sad for you. It would make real ALS patients angry. 

I've seen the real ALS up close a few times, it's not pretty and it doesn't lolligag for 2 years, by 2 years it's really bad, (breathing machine, wheel chair, bedbound) that is if your not dead by then. 

I'm sure your dr feels at a loss, no matter your test results or his expertise, you don't accept the answer. 

What would you do if you really had ALS? How would you live your last couple years on this earth?

 

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My wife works In home health, her latest patient had ALS, he passed yesterday, he had it for all of six months, ALS is a brutal disease, two years in you'd KNOW you have it. His symptoms weren't even twitching, in fact he said he didn't know something was wrong until he couldn't hold items anymore. His wife is a neurologist and she suspected ALS only after every battery of tests you can think of. She said the first symptom people rarely notice is intermittent weakness, like your hand slipping when you try to pull the covers up, etc. She said Twitches are a last phase symptom, appearing after the muscles have already started to atrophy. 

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3 hours ago, Jadex said:

My wife works In home health, her latest patient had ALS, he passed yesterday, he had it for all of six months, ALS is a brutal disease, two years in you'd KNOW you have it. His symptoms weren't even twitching, in fact he said he didn't know something was wrong until he couldn't hold items anymore. His wife is a neurologist and she suspected ALS only after every battery of tests you can think of. She said the first symptom people rarely notice is intermittent weakness, like your hand slipping when you try to pull the covers up, etc. She said Twitches are a last phase symptom, appearing after the muscles have already started to atrophy. 

Yep. And even those intermittent slips (losing grip) are most often harmless (e.g. not related to ALS or any other serious condition). I've done that many times over the years, presumably due to working on computers for so many years (carpal tunnel?).

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On 5/29/2019 at 8:35 AM, otten said:

The only thing crucial for you at this point is therapy. You need a therapist not a neurologist. If you actually want to get over your anxiety you have to quit the reassurance seeking. To be honest I think your neurologist is being very irresponsible continuing to see you when you do not have a neurological condition. 

Twitches are normally. Everyone has them. Non anxious people just don’t notice or care. Bodies are not symmetrical. It is totally normal to have differences between left and right side. 

You have been cleared by a neurologist. Now you need to learn to trust that. 

I couldn't agree more! Especially about the therapist, but also the neurologist being seemingly irresponsible. I saw a cardiologist once after an episode of afib (triggered by a non-cardiac issue). He assured me all was well. I went to see him a while after that at the advice of my primary (family history of early heart disease) and he basically told me to piss off. LoL. Nah, but rather than continuing to evaluate me for whatever reasons I feared, he told me that unless something changes he doesn't need to see me for at least another 10-15 years.

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There are a couple ways to approach this. Freaking out and running to the neurologist isn’t the way to go

I had a terrible bout of twitching and cramping 10 years ago, after a URI. It was a combination of stress, heightened immune response because of the infection, etc. But like you, I was convinced I had ALS. made an appointment to se the neurologist, but I couldn’t get in for like a month.

So this is what I did, and this is what you should do:

1. Go the gym every day and lift weights. Work different muscle groups, and especially the legs. Work on building strength, and increase the intensity of the workouts as you go. You will get stronger.

2. Drink a potassium energy drink or Pedialyte a few times a day. Also eat bananas. This is good for the muscles and nervous system, and works to reduce the twitching.

3. A couple times a week, have a glass of wine at night and CALM DOWN. Watch a movie, relax. Don’t focus on the twitching.

So after one month of this, my strength had gone up considerably, and I felt much better. I told myself “there is absolutely no way I have ALS if I am getting stronger”. I cancelled the neurologist appointment and never looked back.

And sure, my legs still twitch here and there, and it is usually because I run and bike a lot.

Try the above regiment—I can guarantee you will get through this, and there is simply no way you have ALS

We always second-guess our doctors

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10 hours ago, Silas said:

There are a couple ways to approach this. Freaking out and running to the neurologist isn’t the way to go

I had a terrible bout of twitching and cramping 10 years ago, after a URI. It was a combination of stress, heightened immune response because of the infection, etc. But like you, I was convinced I had ALS. made an appointment to se the neurologist, but I couldn’t get in for like a month.

So this is what I did, and this is what you should do:

1. Go the gym every day and lift weights. Work different muscle groups, and especially the legs. Work on building strength, and increase the intensity of the workouts as you go. You will get stronger.

2. Drink a potassium energy drink or Pedialyte a few times a day. Also eat bananas. This is good for the muscles and nervous system, and works to reduce the twitching.

3. A couple times a week, have a glass of wine at night and CALM DOWN. Watch a movie, relax. Don’t focus on the twitching.

So after one month of this, my strength had gone up considerably, and I felt much better. I told myself “there is absolutely no way I have ALS if I am getting stronger”. I cancelled the neurologist appointment and never looked back.

And sure, my legs still twitch here and there, and it is usually because I run and bike a lot.

Try the above regiment—I can guarantee you will get through this, and there is simply no way you have ALS

We always second-guess our doctors

This is awesome - it helps channel your anxious energy into something positive, helps prove to yourself you aren't sick, and gets you fit in the process! 

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