Question about my symptoms

[Mattatut]

First and foremost I want to say to all of you that have this dreaded disease I am so sorry. It is awful and I hate to even come here amongst you who are going through so much to ask these questions.

Second, I am fortunate in that I am the CEO of a relatively large hospital so I have access to physicians at a moments notice and for that I am blessed.

My symptoms started 6 days ago after playing golf. I had a fasciculation that started in my left arm. It was in one spot and seemed to be sporadic for about 24 hours but then slowed down tremendously. My first thought was dehydration. So I hydrated heavily to the point that I was peeing every hour. I was hydrating with Powerade, which does have magnesium in it.

Over the course of the next week I noticed small and infrequent fasciculations in my legs. Again, very small and very infrequent. Then I played golf yesterday again. No problems and no issues with balance walking or anything else. I have had zero issues with balance or strength that I can tell.

After coming home from golf yesterday and watching a football game that I got very into, I was jumping up and down at the end in celebration (Tennessee's last second Hail Mary win against Georgia). I noticed after the game and even into this morning that my fasciculations had really kicked into high gear. They are constant in my legs and now in both arms. They are pretty intense in my legs in their frequency. That is less than 6 days from when this started.

I have talked to 2 neurologists already. One is an outpatient neurologist who has a fellowship in neuromuscular diseases. Perfect, she is basically an ALS specialist. She said it is probably something else based on our conversation, but she did schedule me for an EMG as I asked her to. It's on Tuesday. I also talked to one of our inpatient neuro-hospitalists. He said "that is way too quick for the fasciculations to spread like that for it to be ALS".

Ok, all in all the verbal feedback has been good, but I will admit I'm somewhat a stress monster as my job is extremely stressful. I know I will get checked out thoroughly on Tuesday, but I have read a great deal on this site over the past week and was just curious if my symptoms are representative of what anyone else on this site had as their first symptoms of ALS.

Thank you all in advance for your help and God bless you in your fight with ALS or any other MND you may have.

 

[Nikki J]

For what it is worth, I, a non neurologist who does not even know you, agree completely with what you were told. You are fortunate beyond belief to get an EMG so quickly. Please do not fall into the common trap of questioners here who have a normal EMG and then ask " was it done too early"?

If the symptoms continue to be bothersome of course make a proper appointment rather than contine curbside consults. I have a family member who also was a non clinician in health care He directed his care and consults ( he did have appointments but bypassed usual channels) saw the best of the best but in the wrong area and ended up misdiagnosed. Had he gone through the usual pcp, referral process it would not have happened ( the specialist of course shares the blame)

Good luck with the emg

 

[Mattatut]

Thank you very much Nikki. Unfortunately with my job, stress management is a way of life and I am very poor at it I must confess. I'm thinking at this point it is probably BFS, but I wanted to throw the situation out there.

Thank you for the advice as I agree 100% about making sure I see my PCP. I also want to reiterate again my angst about posting here amongst others who are dealing with so much, but I want to sincerely thank you for taking the time to help others.

 

[FamilialALS?]

Six days of symptoms.

Two neuros telling you doesn't sound like ALS.

An EMG already on schedule in two days.


Honestly ALS is a bizarre concern to develop at that pace. And BTW you describe nothing that would justify concern of having any terminal condition.

 

[faithandlove]

You are very lucky to have access to doctors, and I so envy you. I was not that lucky, and went through hell getting diagnosed.

Of course, I do understand that ALS is the last thing a doctor would want to diagnose you, and they have to check on all other possibilities which are a lot. Checking on these other possible causes for your symptoms takes a lot of appointments and tests. I will state that I did not even think that I would be diagnosed with this awful disease, and I had all of the symptoms - falling because my legs gave out, dropping things, not able to zip up or button clothes, choking and coughing where it was difficult to catch my breath, and twitching which I don't care about, I just want to walk again.

So you are way, way too early to be on this forum checking with us about your symptoms; however, I understand the anxiety and worry. You just have good resources already, and there is no need to be here.

Take care,
Deb

 

[Mattatut]

You are very lucky to have access to doctors, and I so envy you. I was not that lucky, and went through hell getting diagnosed.

Of course, I do understand that ALS is the last thing a doctor would want to diagnose you, and they have to check on all other possibilities which are a lot. Checking on these other possible causes for your symptoms takes a lot of appointments and tests. I will state that I did not even think that I would be diagnosed with this awful disease, and I had all of the symptoms - falling because my legs gave out, dropping things, not able to zip up or button clothes, choking and coughing where it was difficult to catch my breath, and twitching which I don't care about, I just want to walk again.

So you are way, way too early to be on this forum checking with us about your symptoms; however, I understand the anxiety and worry. You just have good resources already, and there is no need to be here.

Take care,
Deb

Sorry Deb....I can't imagine what you are dealing with. I was mainly trying to see if anyone else had the twitching that started as rapidly as mine did and if it ended in an ALS dignosis.

These two neurologists are my friends, so of course I truly believe they're trying to put my mind at ease until there is something definitive. Working with doctors every day I can attest to the fact that they don't like to give patients bad news until they know for certain.

I know people here are dealing with much, much more than I am. I was just trying to get some feedback from others experience.

Thanks again for your feedback!

 

[Mattatut]

Six days of symptoms.

Two neuros telling you doesn't sound like ALS.

An EMG already on schedule in two days.


Honestly ALS is a bizarre concern to develop at that pace. And BTW you describe nothing that would justify concern of having any terminal condition.

Thank you very much for the feedback and I greatly appreciate you taking the time for it. I wish you all the best and prayers your way in dealing with your illness.

 

[Atsugi]

Mattutat, you seem like a pretty smart fella, so I'll take you seriously. (Although I must admit that anyone asking about ALS based on a few days of twitching would normally earn a really fast KITA.)

First, as long as you're working, there is no advantage in discovering ALS as early as possible. In fact, it would be a bad thing to learn, so early in the disease process, that you have an incurable terminal disease, it would simply make you depressed for a longer period of time before you die.

Second, let's look at your symptoms. Twitching, nothing else. There are probably 100 reasons why a person might have your symptoms. Instead of inquiring about the most common--stress--you went straight to a rare disease. That makes no sense. That's something worthy of the name "Nervous Nelly."

Remember, when you hear hoofbeats, think horses, not zebras.

Third, people twitch. It's just something weird the body does. As you get older, your body will do a lot of weird stuff. Not everything needs medical attention.

So good luck. But if your neurologist friends have said "Naw. No ALS," then you might want to ask yourself why you're insulting their intelligence by getting the EMG.

 

[Mattatut]

Mattutat, you seem like a pretty smart fella, so I'll take you seriously. (Although I must admit that anyone asking about ALS based on a few days of twitching would normally earn a really fast KITA.)

First, as long as you're working, there is no advantage in discovering ALS as early as possible. In fact, it would be a bad thing to learn, so early in the disease process, that you have an incurable terminal disease, it would simply make you depressed for a longer period of time before you die.

Second, let's look at your symptoms. Twitching, nothing else. There are probably 100 reasons why a person might have your symptoms. Instead of inquiring about the most common--stress--you went straight to a rare disease. That makes no sense. That's something worthy of the name "Nervous Nelly."

Remember, when you hear hoofbeats, think horses, not zebras.

Third, people twitch. It's just something weird the body does. As you get older, your body will do a lot of weird stuff. Not everything needs medical attention.

So good luck. But if your neurologist friends have said "Naw. No ALS," then you might want to ask yourself why you're insulting their intelligence by getting the EMG.

Atsugi,
I greatly appreciate your feedback and I certainly hope you are correct in your assessment. I just wanted to see if anyone who's been diagnosed started with symptoms the way my symptoms have appeared. I know there are hundreds of things that can cause it and due to what this awful disease does to people I was VERY hesitant to post what some might think silly and over worrying on here.

BUT, I can't tell you how many times I've seen doctors miss something...especially early in the game. Especially through over the phone/non traditional consults. Considering I have 2 children who are 6 and 8, I just want to be fully prepared. In my career, I live quite a ways from any family at all other than the ones in my house and I just want to know so I can make the necessary arrangements.

I came here to ask partly because I do know someone who passed in 2015 of this dreaded illness and his first symptom, based on what his wife said, was the fasciculations. Later on he was able to trace a path to other symptoms that didn't seem like a big deal at the time but obviously were.

Since I work in a high stress, long hour job, I'm always tired, not in as good a shape as I should be and I have two risk factors. I smoked for years and occasionally have one now and I was in the military. Not sure what the military has to do with it, but I have read they have a trend that's been noted but no cause has been established.

I also had 2 close cousins die in their teens from adrenoleuokodystrophy, which I can say from having been witness to that, was beyond horrible. That being said I've always feared any type of neuromuscular disease even more so.

All that being said, I truly hope that I can put my mind to rest on Tuesday and move on to less stress in my world. I have read a great deal on this site and appreciate what you all do in having this site as a resource for those who have it and those who don't. And also to the great posters who try to help others and also put people's minds at ease like myself.

Thanks again and I wish you very best.

 

[affected]

Millions and millions more people start with twitches and do not have ALS. Twitching means nothing.

That should answer your actual question the most accurately.

Stay off here now until you have the EMG and then just tell us you are clear.

No, they can't do the EMG too early. All the best.

 

[Atsugi]

Ditto what Tillie just wrote. Mattutat, you missed my point. Twitches mean nothing. They are very common to many things, or nothing at all.

An FP will see hundreds of cases of "the flu" each year. "Doc, I feel terrible. I have a terrible headache, neck ache, tummy ache, and a fever." Doc says "fill up on fluids and get some rest. If it gets worse go to the ER." Doc knows that out of several thousand diagnosed cases of the flu, one person will actually have bacterial meningitis and possibly die.

Mattutat, you've jumped from twitches to ALS in an instant. Makes no sense. Yes, there are some people who started with twitches and ended up with ALS. But there are millions of people who started with twitches and ended up with "stress and anxiety."

As Tillie said, come back and tell us how it turned out. (Use this same thread, please.)

 

[Mattatut]

Great news! Appointment today for EMG/NCV went well. She said it was perfectly normal with the exception of a slightly slower nerve response below my right knee, which she asked me about crossing my legs, which I do with that leg. She told me not to do that and everything else was perfect. I did have some fasciculations during the test and she said they sounded normal, like "popcorn". She did recommend doing a follow up in 6 months, but said she saw nothing to be concerned about.


Thanks to all for the kind words of encouragement and comments! Bless you all and I again appreciate your responses.

 

[affected]

Terrific news, close the door firmly on your way out, in fact lock it and throw away the key.

If you stay here (and you are here an hour after posting your good news for some reason), you are in need of serious anxiety therapy.

 

[Mattatut]

Just thought I would post something interesting that I discovered that I think may be good news for some twitchers....

My twitching was pretty crazy lately with no other symptoms. I was discussing it with a friend who is a physician and we talked over my meds. I take Nexium every day and have for the past 4 years. It turns out that Nexium has a side effect of reducing the cells ability to intake magnesium....which of course CAN lead to twitches.

Since this was the case, I took some Pepcid to see what it would do instead of the nexium. I also decided to take some calcium and magnesium supplements. Well, about 2 hours later after taking the supplements (which I had taken when I was still on Nexium and it had no effect) my fasics are WAY less than they were earlier today.

Turns out it may be damn Nexium that caused my issues! Waiting, hoping and praying that's it and I can return to a normal life.

Again, thanks to the many folks who responded to my post and I wish you guys the absolute best!

 

[Mattatut]

I just wanted to follow up and say that stopping the nexium did nothing for me. Twitches be damned!

One quick question for those of you who care to answer.....

I know I shouldn't still be here or worry about this, but just something I noticed if someone thinks I should follow up with my neurologist again or be concerned. My mom was visiting and she's a nurse so I decided to share with her my testing and my concerns and when I told her the results of my EMG were clean she was obviously relieved, but she did notice something....my left calf, where the twitching is more constant, looked smaller. I decided to measure that calf versus the other because I noticed it too, but to be fair I'd never paid much attention before. It is a full half inch smaller when measured around at the same point than the other one. 16 inches versus 16.5 inches. I know I'm definitely right side dominant and I'm still having zero other symptoms or issues other than the fasciculations. Would anyone else be concerned about that? I'm not sure if that's a "clinical finding" or not. Again, not looking for something, but just want to get as much reassurance as possible so I can put this to bed.

Thanks again.