Is this ever going to stop? (ALS Fear)

[Cubanborn87 42]

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.

[otten 23]

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. 

[Jae 211]

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?

 

[Jadex 0]

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. 

[bin_tenn 1252]

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?).

[bin_tenn 1252]

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.

[Silas 8]

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

[liveinthenow 15]

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! 

[mjm 0]

Hello,

My name is Mike and I have a few questions for the forum. Feeling anxious which is new for me.  My family was recently impacted with 2 Uncles on my fathers side who were diagnosed with ALS at 55 and 62 years old just recently. They identified the C9 gene and so we have the familia (inheritance)  ALS since another Uncle ( Fathers side) also died from this 30 years ago. 

My father( who had 50% chance of inheriting the gene)  is 73 and in great health and asymptomatic. I'm 49 soon to be 50 and for the past 6 months I have had a strange tightness in legs when I wake up. Upon getting out of bed I feel the legs contract calves are tight ( hard to describe) but some times feels like a wave and I step gingerly for a few steps then they loosen up.

I'm in  good heath and with a good weight and walk/hike.

For some time I figured this was just getting older but it hasn't relented so I saw a hormone doctor who ran tests and determined my Thyroid was not working that great. I needed to increase my Synthroid so was given  levothyroxine 3 months ago. During my taking  of this medication I developed fasciculation's ( legs, biceps, chest, abdomen) I told the hormone doctor about this and she said it was likely due to the medication and to give it 2 more weeks but it has not stopped. I just stopped 4 days ago and I still have some twitching. Given my family I hope this  helps.

I do plan to see a Neurologist on my morning stiffness ( off/on tight legs during day) and the fasciculations that I hope stop soon. At the moment I'm at going to gym and not noticing any thing major so that it is a relief but I my mind wanders to think that maybe I'm in the early stages of ALS.

 

Any input or advice would be greatly appreciated. 

Kind regards,

Mike 

[Holls 1505]

Hi. I was an als worrier and I try to not comment too much our I'll start to worry again, it's all very suggestive when you have anxiety. Since this is in your family I can see how you are hyper aware of any feelings you have. Tightness and twitches aren't symptoms. 

I'm so sorry that your uncle's have been diagnosed.

I hope that when you see your neurologist that you can get the relief you need to move forward. 

I would suggest seeing a therapist. Not only will they help with the ALS anxiety it helps with anxiety in general. It absolutely saved me. Hugs! 

[Ironman 198]

This is once of those things that seems to be progressive - things just don't happen overnight.  It's not worth dwelling on 24/7 because you miss out on life along the way.  Just monitor symptoms and if they go on for a long time, then see a doctor.

[AriaRen 19]

Worried about my twitches as they've been going on for over a year, but apparently my strength & reflexes are fine, as are my bloods, so my Dr won't refer me for any further tests. Scared they're missing something since they've been going on for so long 💔

[Ironman 198]

5 hours ago, AriaRen said:

Worried about my twitches as they've been going on for over a year, but apparently my strength & reflexes are fine, as are my bloods, so my Dr won't refer me for any further tests. Scared they're missing something since they've been going on for so long 💔

Twitches are likely muscular.  Blood tests would have registered something if the muscles had issues. :)

[AriaRen 19]

It's muscular I'm worried about 😅 

[Ironman 198]

6 hours ago, AriaRen said:

It's muscular I'm worried about 😅 

Muscular twitches are more common than you think.

[Doug97 19]

My calves have been twitching 24/7 for the past 2 months. I too am terrified of ALS but I have have started lifting weights in the gym again and eating more protein. Every gym session I can either do an extra rep or I go up a weight. In other words, I'm getting stronger and my muscles are growing. I find that very comforting, especially because recent research suggests exercise accelerates ALS. Also, it's shown me that my strength is symmetrical, especially in my legs. 

My recommendation is to watch a few YouTube vids on resistance training for beginners, then get yourself to the gym. You only need to go for an hour twice a week to see rapid progress if your diet is right. 

I have a qualification in gym training (as well as a PhD in Biochemistry) so let me know if you want any more advice.