Very concerned about als

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Alexander Tsv

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Hello everyone.
First of all I would like to thank you for taking of your time to read this.
I just turned 29 years old.

It all started around two months ago. This year has been very stressful for me as I am expecting a baby girl in septmeber. I had a minor incident while skiing, went to see a cardiologist and run blood tests+urine. Everything was fine although my cholesterol is high by default. It was 7.34 and that stressed me out. I then started to hit the gym much more often and for a longer time plus cardio after workouts. Then I got a small injury but kept on working out and skiing at the same time. In the mid - end of May I injured my right arm by working out my arms and got really worried as a small ball appeared right on my elbow. I went to see a doctor and after two very stressful weeks and an x Ray he told me there is nothing to worry about and I was extremely relaxed about that.

However I was still thinking about it and whether I should remove it or just let it be (as suggested from the doc). I slowly started to prep of going back to the gym and did a leg workout after more than a month break. Everything went well and I decided to hit chest already. The night after that workout I got a nasty cramp on my right triceps which continued all night. Even when I woke up next morning i was surprised to see that it was still going but thought I over trained my muscles. It stopped but the day after I started watching at my right arm to check if everything is okay. Then after focusing on that problem I started noticing twitching on my left arm, I still thought its all from the workout. On the day after the next one I saw it was on my left hand too and this really got me stressed out as I immediately thought of als. I tried to ignore them as it was on my upper body and was still thinking its from the workout and went to workout my back. It all went well and they were gone during the workout but I decided to check the bottom part of my body and guess what, both my calves were having small twitches. This is when I lost my sleep and got depressed.

After couple of days I went to run new tests and they were normal beside my cholesterol (which as I said it's always jihh, runs in the family) and creatinine which was high.(everytime I run blood tests it was high). On the next day went to see the first neurologist and after detailed examination he told me its all in my head and that I am completely fine and sent me home. I was relaxed for a couple of days even tho my twitching spread all over my body (but, back, belly, legs, thighs, arms, neck - everywhere). Then my depression and anxiety hit back and I started feeling very bad again... In the following week or two I was really low and decided to go check another neuro(in a prestige clinic) and he also checked me and said there is nothing to worry about but if I wanted he couldv'e run the EMG and I agreed. He did it on my left calve (from the top), thigh, in between the thumb and my pointing finger(sorry for my English), on my biceps and on my right thigh. It was all clear as he expected, no sign of MND. He then gave me milgama N(vit b) , magnesium magnerot 500mg twice a day and pasiflora relax for my sleep and Sent me home.

So there was a really good improvement for two weeks as my twitching was almost gone beside my calves. Some days they were more easily seen and some I couldn't see or feel them at all. Went on a second visit to the first neuro who told me that I have nothing to worry about. Went on a holiday and after the second day everything was much better. Until this last monday when I went to see the second neuro (the one who made the emg) again and he checked me again and said there is nothing wrong again. I told him my upper twitching was gone and that my sleep improved a lot as well as my appetite which I lost in the very begining.I also started working out again (pull ups, push ups, dips, squats, etc.) Have plenty of power. So he told me to keep taking the vitamins and if in a month time the twitches in my calves aren't gone that I can go make an MRI of my lower back/spine to see if the problem isn't a pinched nerve.

The visit was on last Monday and this past week has been terrible. As I was working from home on my laptop, a small muscle on my right shoulder started cramping /twitching rapidly for no reason (my arm was stretched for a duration of time but still). This freaked me out and most of my twitching came back with full power. It was for about 10-15minutes and it was gone. Went and did a workout and it was all kinda fine. However , as more I was looking for a new twitch as more would appear. Three days ago my right cheek on my face started twitching non stop and I started losing my sleep, joy and appetite again.

It's been three days now and this just won't stop. I am terrified and will run more tests this week. This last cheek/jaw twitching isn't dissapearing for 3days now. It stops for some short period of time and then it comes back from nowhere and its really annoying!
I've read the whole Web, went through so many forums, watched videos on YouTube which increased my anxiety and twitches a lot...

And one more thing, probably after one of the workouts a small muscle on my elbow becomes a little stiff or something for a second or two and then it starts twitching for 30 40 sec. Sometimes appears two-three times a day, sometimes much more often.

All I see on the Web is MS, ALS, tumors, etc. And I am terrified and depressed especially when I read that it takes a long time for one to be diagnosed and this is slowly killing me.

Thank you for understanding.

Sincerely,
Alex
 
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affected

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We will never say that multiple neurologists and EMGs are wrong.
Please go and get help, tell your primary doctor that you can't stop obsessing. You are being irrational.
ALS does not present the way you are describing.
I sincerely wish you the best.
 

Bestfriends14

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Hi there,

I honestly have no idea how you happened upon an ALS website and thought it was OK to go on and on talking about your ability to do all kinds of workouts. The folks here are unable to do any of what you say, so your story isn't a story of one living with ALS.

Continue to work with your docs and perhaps add in some counselling and meds as a multi-modal regime. Live for your baby girl and leave this disease behind. You really, really don't belong here. That's a good thing.

Take care
 
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lgelb

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It appears that anxiety is getting the better of you. If you get help for that, with counseling, it is likely your physical problems as you see them will gradually improve. As others have said, there is no reason at all to think of MS or ALS or really any serious neurologic disease.

Best,
Laurie
 

Alexander Tsv

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Thank you all very much for the replies.
But there is one thing that worries me a lot, in so many websites is being commented that als starts with twitching and nobody really pays attention to it until its obvious. My right cheek on my face started twitching 3-4 days ago and its much more persistent than any of the other twitches, sometimes it stops for a period and it comes back again, its sooo annoying and depressing. As I said a lot of people are saying that twitches could be the first sign of this terrible disease as its been around two months now where I have twitching in all over my body with small periods of remission. (sometimes days). I did another blood tests today and I included creatine kinase and everything came normal beside my inherited cholesterol as usual.
I have power, walking, eating, swallowing normally but these twitches, especially on my right cheek and left elbow are making me extremely nervous.
Also, with all my respect to everyone here I never meant to insult or anything anyone.
I came all the way here because I feel desperate and really stressed.
I'm just scared that it's too early and a lot of people say it takes months to a year, year and a half sometimes for an individual to be diagnosed and this is slowly killing me....

Thank you once again and I really think and hope it's time for the scientists to find a cure for this horrible horrible disease.

Sincerely,
Alex
 

Bestfriends14

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Alex, please print off what you have written here and show it to a counsellor. You are being completely controlled by an unfounded, irrational fear. What you feel, your baby feels. Try to remember that.

Who cares if you are twitching?? 70% of humans twitch; do 70% of people have ALS? No, they do not. Neurologists don't diagnosis ALS on twitching, they diagnose on loss of function. Twitching is not on their list at all when suspecting a motor neuron disease. As I said, it's loss of function, EMG results, and clinical exam findings.

Please read the sticky at the top of the sub-forum and move on from this site. There's nothing the folks can do for you as you do not exhibit anything remotely close to ALS onset.

Goodbye and take care.
 

lgelb

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"So many Web sites" also say that the Covid vaccine is a cover for the government to microchip you. Do you believe that, too? You can believe what you find in clickbait and biased personal anecdotes, or you can believe the number of people here who have actually had the diagnosis that you are chasing.

Let's say it again before I close this thread, Alex (please don't start another), in the interests of your mental health. No one here has had your twitching story, which includes the classic finding that the more you look, the more they appear, and turned up with ALS or anything remotely as serious.

The people who take a while for diagnosis have serious abnormalities, and more possible causes. Speaking of which, your high cholesterol is obviously bothering you, so I would certainly seek a cardiology opinion on what to do what about it. Anxiety magnifies twitches, strange feelings, and all manner of physical issues.

Stay off the web, forums, videos that relate to ALS and everything like it. You don't need them. They don't relate to you.

Print this out and put it where you can see it -- you're not dying, you have a hereditary cholesterol problem that needs to be followed up, and though it may take counseling to see clearly, you can have a normal healthy family life, that people with ALS don't have. Please pay them the courtesy of finding your own peace with a far less serious situation. Your future daughter deserves your full attention.

Best,
Laurie
 
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