Fearing For My Life, Please Help

[KevinG99]

Before I say anything I just wanted to say that YES, I have read the stickied “read before you post”

I am a 19 year old male. Starting in the beginning of November I began to experience constant twitching in my calves. The twitching is 24/7, it does not stop. The only thing that will change is the intensity of the fasciculation (small ripples to intense thumps you can see though pants.) I also experience pretty frequent twitching in the arches of my feet and a few times a day I will twitch very briefly somewhere other than my legs. The arches of my feet and my calves will ocassionally cramp up into a charlie horse as a result. I have noticed the twitching only seems to happen at rest, if I am standing I don’t seem to see or feel any fascics. I have recently began to notice that my thumb and the muscles around it seems stiff and harder to use, but that might just be obsessing over this.

I am aware that the sticked post says ALS will not begin with twitches before weakness and atrophy, however using the search bar I was able to locate MULTIPLE people who have been diagnosed stating that they experienced fascics before any weakness, so whats up with that? Information seems to be very conflicting and confusing.

I went to the Neurologist a couple weeks ago to try to get answers. Of course, the only time the twitching has really ever stopped is when I went in. He did not seem to notice any weakness or atrophy. He told me I could receive an EMG if I wanted to but he extremely exaggerated on how painful and uncomfortable that test is to scare me away from requesting it because he did not find it neccesary because of my age.

Another thing to note is I experienced rhabdomyolysis at the end of August after hitting the weights hard after a year of very light activity and basically being sedentary. At first I just assumed I went too hard too fast without proper hydration, but now with the ALS concerns I am freaking out that they are all tied together.

I am in constant discomfort from the twitching. It causes my legs to be stiff and achey, and the twitches themselves are so strong and intense it feels like someone is constantly thumping on my legs. It is all I think about because it is so distacting and frightening. Do you think I should go ahead and get an EMG or would it just be a waste of time and money and I am just being a hypochondriac?

 

[lgelb]

1) 24/7 twitching is not ALS. (I'm not going to ask how you know it's 24/7, but...)

2) Given #1, your second point, even if true (I won't debate phantom posts; cite one for comment if you'd like) is moot

3) So the twitching stopped when you saw the neuro...hm, not 24/7, then

4) Rhabdo causes should always be fully explored. Who diagnosed it and what did they say? What treatment did you receive? Needless to say, assuming you laid off lifting while evaluating rhabdo, if you are back full tilt now, your muscles could be telling you something like ramp up slowly, and since rhabdo implies actual damage, you should have been informed when/how much to lift

5) An EMG is very unlikely to be revealing, and it won't fix stiffness, achiness, twitching -- these are signs of muscle issues, not nerve issues. I would return to your PCP and any specialist s/he recommends, and run through what you can do to feel better/monitor the health of your muscles. If your PCP is not up for it, find another.

Addressing hydration (it's not just about X ounces a day), stress, stretching, sleep and nutrition are the five issues most likely to make you feel better.


Best,
Laurie

 

[KevinG99]

1. You’re right, I can’t be sure it is 24/7 because in theory it could be stopping while im sleeping. However, whenever I am awake I see and feel them constantly without stop.

2. I am not trying to be rude or arrogant, I am genuinely curious and confused on my findings. Heres one example: “My fasciculations were my first outward sign. Started in righ tcalf and more than 3 years later they are everywhere below my shoulders along with some atrophy and breathing problems associated with the atrophy.”

3. It was on the handful of times that I noticed it stopped. However, I still did have a couple fascics that he did see it just was not constant thumping.

4. A specialist at the hospital is who diagnoses the rhabdo. I spent 5 days on an IV and then was sent home and told to stay very hydrated and do not work out for a while. I am finally suppose to be easing myself back intto it now.

I am positive it is not a hydration issue as since rhabdo has occured I have always made surecto stay hydrated. I had urine and bloodwork done and no deficiencies or anything of that nature came up.

I am sorry if posts like these come off as rude, ignorant, arrogant ect. That is not my intention at all, I am just insanely concerned about having ALS to the point to where I am no longer living the happy life I was.

 

[dldugan]

Doesn’t sound like ALS to me. I did not find EMG’s particularly painful. Pin pricks to your legs that are no more painful than an injection. You are in a good location for EMG’s. I went to the Rush Memorial Neurology Center in Chicago. If the only way you can eliminate your fear is with an EMG then do it now. It would be far less painful than the mental anguish you are now experiencing.

 

[Clearwater AL]

Kevin, as you wrote... the last sentence.

" I am just insanely concerned about having ALS to the point to where I am no longer living the happy life I was."

That is arrogant... there are members of this Forum have ALS living with it everyday.
They have Caregivers and love ones who live with everyday.

None of us have gone insane. We make the best of life as we can each day.

You have yet to be diagnosed.

You are far from it.

As you also wrote you saw a Neurologist...

"He did not seem to notice any weakness or atrophy."

You need to get a hold of yourself and think before you post again and who you
are posting to. There are extremely knowledgeable members here, who have
ALS or care for one who does.

 

[KevinG99]

Thank you for all the replies. Im sorry if I was being arrogant for worrying.

I have one morequestion because it has not yet been acknowledged. Although the twitching is my main symptom, my thumbs and the muscle in my hand below it are very stiffy and do not feel like they are moving right. Working with small object seems to be more of a challenge than it used to be. Can this a sign of ALS or am I misinformed again?

 

[KarenNWendyn]

Kevin, I’ll jump in here if I may.

You saw a neurologist who “did not seem to notice any weakness or atrophy”.

You do not have ALS. Part of diagnosing ALS requires finding weakness (documented by a neurologist on exam) in at least three regions (bulbar, arms, chest, or legs). If you don’t have documented weakness and failure of muscle function, there’s no reason for you to be here.

I don’t care how often you twitch. Many healthy people twitch. Twitching is common, nonspecific, and meaningless.

Get a hold of your anxiety and get your life together. You’re too young to be wasting it obsessing about a diagnosis you don’t have.

 

[KevinG99]

I am just very confused with all of the conflicting information I have been reading. For example, this is a quote from someone describing their first symptoms of ALS: “initial symptom was fasciculations. Like a lot of them. They started in my upper arm and then my legs and then my hands. This all started last October, but they were minor, and then developed into full on 24 hours a day very extreme fasciculations. I had a clean EMG and MRI in May and was told I had BFS. A few months later I started having trouble using my right hand pincher muscle. No insomnia (though I do have some from anxiety of the possible diagnosis and now actual diagnosis).

This came from someone with a confirmed disgnoses. Symtopms seem to be almost exact as mine (twitching and trouble using pincher muscle in hand) I really mean no offense by bringing these examples but they seem to completely go against the message here of “Never starts as twitching, EMG will never show clean and then dirty ect ect ect) I read things mods say on here and then I read multiple peoples experience and they are just completely conflicting. Why is that? I understand that it is frustrating having people come on here with symptoms that arent associated with ALS on this forum, but it is equally as frustrating knowing something is wrong, reading multiple experiences extremely similar to mine and then basically just get treated like a joke when you are truly fearing for your life.

 

[ShiftKicker]

No one is treating you like a joke. However, they are telling you there doesn't seem to be a pattern of symptoms that indicate ALS.

This forum is not set up to support people who have not been diagnosed. Its primary function is to provide support and information to people with ALS and their caregivers. You have received several knowledgeable replies and the recommendation you continue working with your doctors to figure out what's going on.

Many people who are convinced they have ALS and who have all the attendant feelings of anxiety around fearing such a disease often feel dismissed when others here don't agree with them. This is not the case- it's just that this forum is here for those already diagnosed and is not set up to provide ongoing medical diagnostic advice or emotional support for those who do not have ALS. You were not reassured by a neurologist, who provided you an explanation as to why they eliminated ALS as a possibility- will trying to convince strangers on the internet you have ALS help you in any meaningful way? Is this a reasonable or constructive use of your or members of this forum's time?

 

[Bestfriends14]

Ah yes, the cherry picker of ALS symptoms. 70 % of people twitch; does that mean 70% of people have ALS? No, it does not. You've cherry picked symptoms to suit your anxiety/want of a disease you dont have, regardless of what you think you "know" about this disease.

Please dont argue and find meaningless points to try convince people here that you may have ALS. The only thing that does is convince folks as to your extreme health anxiety.

You don't have ALS, so please move on and cease asking questions of terminally people when you've received answers from forum members and from health professionals.

And P.S. Yes, you are misinformed.

 

[KevinG99]

Ah yes, the cherry picker of ALS symptoms. 70 % of people twitch; does that mean 70% of people have ALS? No, it does not. You've cherry picked symptoms to suit your anxiety/want of a disease you dont have, regardless of what you think you "know" about this disease.

Please dont argue and find meaningless points to try convince people here that you may have ALS. The only thing that does is convince folks as to your extreme health anxiety.

You don't have ALS, so please move on and cease asking questions of terminally people when you've received answers from forum members and from health professionals.

And P.S. Yes, you are misinformed.

Why in the world would I want this terrible disease. Why would you even assume that? I said I am terrified of it how does that sound like I would want it? I just want to understand what I’ve been reading better instead of intentionally being insulted when I never intentionally insulted anyone.

 

[ShiftKicker]

Kevin, it's time to move on. This forum is not for you, and it is not the responsibility of the members here to provide you with further education about ALS. If you have pressing medical issues, consult a doctor. Remaining on this forum and asking people to continue reassuring you despite the information you have already received, and despite the fact a neurologist has also cleared you, does indicate a fixation with the disease, even if you do not see it as such.

I am closing this thread. Please do not open another unless a doctor has indicated there is concern of MND.