I am terrified. Haven't had much internal peace in the last month.

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Kiterunner1987

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First, I want to thank everyone that takes time out of their day to help people in this forum. After doing a lot of research and reading on this forum I have decided to post a thread, seeking help.

The truth is that in the past few weeks all I can think about is ALS. As time goes on the more convinced I am that I have it. Please listen to the symtoms that I have and tell me what you think.

I am a 31 year old male, BTW. About 18 months ago, I started feeling this pin and needles sensation throughout my body. It usually would start and would go on non stop for a few days almost a week. Then , I would no longer have symtoms for a week or 2, just for it to come back for another week and so on. It would feel as if someone was pinching me through head to toes. After a few cycles of going through that, it completely went away. But shortly after, I started feeling muscle twitches throughout my body and they haven't stopped ever since. They go on constantly and are most noticeable when i am sitting down or laying in bed.

I went to the Doctor to see if he could help and he decided to do some lab work. The potassium was a little bit under the limit, so he told me to come back in a week after eating potassium rich foods. Which, I did , as the tests came back normal he completely dismissed my issue.

So , I had been dealing with these muscle twitches ever since, non-stop. They occur mostly on my thighs, legs and feet. But they also occur in my arms, buttocks, abdomen etc.

A few months ago, I started trying to work out once again after taking sometime off the gym. After being on the elliptical machine I would notice that my pinky toe on my left foot would feel different as I was landing on it. I wasn't sure at the time if it was numbness, loss off sensitivity or what could be going on. But, it would go away shortly after so I didn't think anything of it. I would also notice that during the 30-40 minutes on the elliptical , my knee would buckle once or twice. Which, I found odd because this had never happened to me before and I wasn't sure of this was a sign of muscle weakness that I read about when researching ALS.

As time went on , I learned to ignore those symtoms as well. Until one day about a month ago. I started feeling, the same thing with my little toe, but while I was walking at work. One day it felt like it does when I work out, the next day I felt tingling in that same toe, day after it was my whole foot ,the day after that it was my whole leg and lastly it went up to my arm on the last day of my symtoms. I visited the doctor about 2 days after my last symtoms and all she did was tell me to take vitamins, took a blood sample (came back normal), and I took the opportunity to mention the muscle twitches throughout my body, which she completely dismissed. She actually told me to take vitamins for that as well.

Around that time , I had a lot going on, so I took off the gym for a few days. But, on some days I would still get the same annoying tingling through that foot and sometimes it would travel all the way through my leg and sometimes arm. It would come and go, so I was trying my best to ignore it. Then , I went to the Gym about 2 weeks ago and after 20 minutes I couldn't take it anymore. Most of the toes on that same foot went completely numb this time. I stopped and decided to take off sometime off and not put any stress on that foot to see if it could help. The issue is that it has been exactly 2 weeks and the tingling and numbness has not gone away. At the beggining a lot of my toes we're going numb , specially when sitting, for at least a whole week after that last gym day. Even now 2 weeks later, even though, I feel tingling during the day when I am standing or sitting. But, at night it is almost unbearable. As soon as a lay down and i start going to sleep my foot keeps tingling and it goes up my leg as well. It's making it hard to get good rest at night. Even the days that I just feel a very subtle tingle between my toes, I keep thinking to myself that would be the last day. But , it only takes me laying down in bed for it to come back as strong as ever. Every morning that I wake up , at least the foot is showing signs of numbness or tingling.

I also did this experiment on my foot and something it's off with it. When I try to spread out my toes without touching them, I notice that the foot I am having issues with doesn't spread out as much as the other one. The distance from the big Toe to the next to is not as wide and the pinky toe from the other foot comes out latterally, while the one on the foot that I am having issues with doesn't seperate as much and kind of drops a little. I'll try to include some pictures. (Is this what they mean what they say that ALS starts on one limb?)

I told my doctor about all these symtoms and she has referred me to a Orthopedic. But in reality I have been battling all these symtoms that seem connected for a while now. So I made an appointment with a neurologist without a referral, to see if I can finally get some answers.

I have been worried about ALS for a while now, but I have tried my best to keep my mind off of it. But , the more I research it the more convinced I am that I have this terrible disease. I havent been able to get much sleep lately and it is consuming every second of my day. The more I research it the more convinced I am that I have it.

I obviously see articles about how non stop twitching is never a good sign. I also see how muscle weakness is the first sign and it worries me. I don't do a lot of manual labor,but I remember 2 years ago changing the bumper off my car and afterwards my hands feeling numb. I also had a typical feeling after putting together a bookshelf for my daughter and when shoveling snow. In all cases my hands came back to normal by the next day, but I don't remember feeling this before. Is this the first signs of muscle weaknesses that the articles tell you to look out for? I also have had weird symtoms show up this year that make me think of my muscles weakening, I had this terrible Charlie horse cramp on my leg while I was in bed. It was the most painful one that I have ever had and I also pulled a muscle in my shoulder while I was in bed and it was also some of the most itense pain that I have ever felt. It all seems too odd all of a sudden to not be connected.

I keep reading articles and it is truly frightening. I see that there is supposed to be no tingling or numbness with ALS, but then find anecdotes online about how some people one day just stopped feeling their toes, then the leg and before you know it they were diagnosed with ALS. I just see too many dots connecting for all off it not being related. All I think about is my daughters and my family and not being able to see them grow.

I still have 6 more weeks , before I can see my neurologist and this is already in my mind 24/7. Even though I feel helpless and with little hope, I just hope it's anything but ALS. But the more I look into my symtoms online the more ALS comes up.

Sorry for such a long post, this has been something very difficult for me and maybe I am overeating. Maybe the non stop twitching, or the foot that tingles for 2 weeks non stop or this other muscle symtoms I am all of a sudden having is nothing. But God, to me these symtoms seem very connected, very real and frightening.

Thanks
 

lgelb

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I would ask about a screening for RLS (you can also find key questions on line, like whether all the tingly weird leg stuff is worse at rest and gets better when you move).

When we use muscles we don't usually, or those muscles are not exercised a lot, numbness and feelings of weakness can occur. My hands can be painful carrying grocery bags for a distance a certain way. They would never be able to handle a car bumper.

I don't see the dots connecting as you do. But if it takes an orthopod and neuro to reassure you, so be it, and they can rule out the many conditions connected with numbness, for example, that are far from ALS. Meanwhile, try not to feel helpless as no one here is going to ascribe what you describe to ALS. In all likelihood, there is nothing seriously wrong at all.

Best,
Laurie
 

Vincent

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Approximately 70% of people twitch. It means absolutely nothing without CLINICAL weakness. Testing yourself is never a good idea. Lacking weakness I have no idea why you are here on a forum for a disease that leaves people totally unable to move? Sit back, relax and pour yourself a nice big egg nog ( I recommend bourbon, but suit yourself). I don't see any need for you to be here.
Vincent
 

Kiterunner1987

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Vincent, I understand. I have had muscle twitches for 16 months now and I even though I always had a concern in the back of my mind , I never let it consume me.

The reason why I am now kind of freaking out, is because now with this new numbing and tingling that I have on my left foot. I also have noticed what they call toe drag and also have more difficulties performing certain movements with my toes compared to my right foot. I have noticed that if I spread them both out , the one with the numbness doesn't have as much seperate between the toes and I also noticed that if I try to move my big toe down to the sole of my foot while holding the other 4 straight. My right foot is a lot more responsive that my left.

I understand your point and believe me I am not insensitive to it. But please understand that the symtons that I have just listed to you are very concerning to me.
 

ShiftKicker

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Please have a read here: https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html

As you will read in the above- sensory issues such as numbness and tingling point away from ALS. While your symptoms are concerning to you, they don't follow a pattern of ALS symptoms, which is why you are not getting any agreement from the people here. Best you continue working with your doctors to get to the source of your issues, but remaining here to research twitching is not a healthy or productive pastime.
 

lgelb

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Kite, you are missing Vincent's point.

A lot of people show up here "concerned" about their symptoms, waving their concern like a flag, convinced that we are dead wrong ipso facto if we don't show the same concern.

Why are you here if you are going to ignore anyone who doesn't share your concern? Why are you chasing a disease we are telling you that you don't have? Why are you unwilling to be less "frightened?" These are good questions to think about.

I don't know where you think you read that people stop feeling their toes and then their legs and then found out they had ALS. ALS does not impair sensation. Nor do your "weird sensations" equate to muscles "weakening." No article has ever told you to "look out for" muscle weakness such as you describe. You don't need to.

In ALS, it's not that you can't spread your toes some way in a test, it's that you can't stand or walk.

Please don't post again until you have medical results to share.
 
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Kiterunner1987

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I understand, I want to thank all of you for responding and taking the time to give me constructive feedback.
 

Kiterunner1987

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Hello everyone, please don't be upset. There has been a change ever since my last post. I would like to give y'all an update and see what you think.

The last few days I have experienced some pretty bad symtoms and I am pretty down.

I am not going to repeat everything that I have mentioned before. I know I had mentioned my toes going numb which was a thing and my whole let tingling.

I am afraid that i was not quite realizing that what I was feeling was actual weakness on my leg. It all started from my toes, which I first noticed when I was at the gym excercising on the elliptical machine. Then the discomfort , weakness or whatever you want to call it started climbing up my leg within days. Fast forwarding a week later my foot is dropping and I am limping a lot. I can still curl my toes but, they do feel very stiff. Specially when I am walking around. The toe issue started just 6-7 weeks ago, while walking.

Yesterday was the first day that I felt clear weakness on my left leg. I have noticed that when you lay down the sensation feels a lot worse. Last night it was so bad I was thinking about going to the ER, the feeling was so bad that it went up all the way to my left hand.

Today I am limping quite a lot on my left leg as I mentioned and I also feel extremely weak on my right leg. I had to go up a hill today to get to my car and I could feel how much weaker the back of my legs are.
I have also noticed while going down the stairs and getting up from the sofa as well.

Yesterday I started noticing how my thumb in my left hand it's a lot stiffer. But the muscle twitching that has been driving me insane for the last 16 months has all of a sudden almost stopped completely.

I have a 10 year old daughter and a 6 year old that I love with everything I have.

I have tried to get the neurologist to see me before February 4tth, but they won't do it. Apparently they have too many patients.

For me I never really noticed the muscle weakness, I would notice my hands going weak after doing manual labor, but since I barely ever do physical tasks I never thought anything of it. It's not until now that I have been experiencing a lot of the symtoms, that ALS is known for. What it's really scaring me is how quick it seems that everything is progressing. Just a week ago , I didn't feel that bad , other than issues with my toes and some uncomfortable feeling that I thought was tingling in my leg.

I also noticed the leg feels a lot worst when I am laying down. So it really affects me specially at night. My friend was telling me maybe a spine issue or a blood clot. But I have researched all these medical conditions and it seems very unlikely.

It is scary how much weaker i feel each day. I had not even felt anything with my swallowing last week and now I do notice it.

Sorry, guys. It just that there have been a lot of changes to my symtoms since I posted. I know you guys told me to not post again, but my doctor appointment is in 5 weeks. And every day I feel worse
 

Nikki J

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Hi I have confirmed clinical weakness in all extremities. I don’t feel weak at all. My body just fails to do things. And when lying down I have no indication at all there is anything wrong. My sister who was completely paralyzed also felt normal- until she attempted to move

I don’t know what is wrong with you but your deacription does not sound remotely familiar
 

Kiterunner1987

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Please , tell me what do you think. I asked a orthopedic and he said the foot was fine and I also asked a different doctor in the ER, but he barely touched my foot but also said I didn't lose any muscle mass. But please look at this picture. This is the same foot that has given me issues all this time. This happens when I turn my toes all the way up.

https://ibb.co/hskFyZg



https://ibb.co/hskFyZg
 

Atsugi

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KITE, you're not paying attention.



First, an ER doc is trained and equipped to keep a body alive and stable enough to send you to another doctor. Don't ask them to tell you what's wrong with you.
Second, did you read the suggested "sticky post" at the top of this sub-forum that is titled, "Read before posting"? It will give you good info. In fact, all you need to know is very simply this:


When we (ALS) say "weakness," we mean:
-- the muscle can not move, perhaps at all.
-- With ALS, you DO NOT feel weak, don't feel tired, the foot doesn't tingle or feel "weird." It feels perfectly normal--just the muscle will not go.
-- With ALS, that failed muscle will NEVER get better. You won't "give it a rest" or "sleep on it" and it's gets better. Nope. When ALS weakens a muscle, it is gone forever.


You have given us NO REASON whatsoever to think you might possibly have any symptoms of ALS.


Don't know what your problem might be, but you are wasting time here when you could be doing something fun.
 
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