Convinced i have ALS? Fasics, Muscle pains. Etc

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Gtee88

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Hi all. My name is George 32yo. i hate to be bothersome but i hope i can find some help on here. I have had a really rough year and convinced i have als and its affecting my everyday life. Will be as informative as possible as i know your time is precious.

Back in March 2020 i had a brain MRI showed a 4mm t2 flair lesion reffered to neuro, Neurologist said its just an aging lesion or from birth no clinically significant.

May 2020 had a blood test, CK levels raised 350 (0-200 is normal range) doc ordered me to get re tested and ck raised to 1000 then doc told me to relax and not exert myself for 1 week then they dropped to 200 (normal)

I wake often with occipital pain and stiffness
Sometimes i do feel tingling sensations on skin and numbish feeling but not really numb if you get me?

About 4 months ago after seeing a myotherapist i started getting muscle fasiculations out of the blue all over, started magnesium b12 and calcium did not help. now i know i have had these before but they are now daily: Hands, Feet, Calves, Abdomen, Quads, back muscles, tongue absolutely random spots at random times all day everyday.

So made an apt for a Nerve conduction study and a EMG everything came back completely normal but still didnt ease my mind. I have no weakness although i do feel fatigued at times i have been on valium for 6 years 1x5mg nightly to calm me down.

For the past 4 months i have been measuring all muscle groups and keeping tabs for atrophy months but they are all growing. I do pushups (140) daily started 4 months ago could only do 70 and getting stronger and doing more daily but i still feel weak

Phone consult with professor of neuro DX me with BFS but it feels like more to me.

Hand dynomometer RH 85KG LH 67KG
Gait normal
Babinski negative
Refelxes all +1 (normal)
Mild cervical spondylosis c3/4

I just dont know where these twitches came from sometimes my thumbs just take off and want to do there own thing without my control. With all my symptoms what do you guys think? Could this be ALS will post my emg results neuro said i have high anxiety i am a nervous person and lost 2 very close immediate loved ones this year to serious illness.
With the CK levels and Fasics all over daily and brain lesion i am so worried even though my CK went back to normal and EMG normal i am still convinced. Please help with any light i would really appreciate. Sorry if this is an inconvenience its taken me alot of time to get to have the courage to post on here but i cant handle this twitching all over daily especially after stretching muscles or texting on phone thumbs go mad even sneezing will make my abdomen twitch. I jad this EMG done 5 weeks into these fasics would it have picked als up? Could it be to early? all muscles were evaluated that fasiculate. Bless you all.
 

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KimT

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Many people have twitches. My neurologist has more than I do. You don't have ALS. Get plenty of sleep, exercise, cut out caffeine, reduce stress and make sure you get proper hydration. Other than that, let your primary care help you with anxiety.

Lots of body builders have elevated CK. Mine is normal (40).

Best wishes.
 

lgelb

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140 pushups daily; still building strength, muscle mass, and endurance; picture-perfect EMG (no, it wasn't done too early; if your nerves were damaged, that would show up) -- there is no reason not to agree with BFS compounded by GAD.

The Valium at night is a bandaid and you will grow more tolerant of it over time, which may be why your fascics are more bothersome now, because your body is expressing the anxiety that you have not adequately addressed. ALS doesn't cause brain lesions and there is no reason to think that it has anything to do with your fascics. Benign means benign.

Get health anxiety counseling so you can spend your life doing more fun and more meaningful things than measuring muscles.

Best,
Laurie
 

Gtee88

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Hi thanks for your reply. I guess when i dr google i always read contradicting stories and makes me worse, like early emgs, ck levels...I have tried coming off the valium and but do now realise i need them to bandaid my feelings much rather take them then live with the horrible panic attacks i get at night. What i hate most is the neuro CANNOT tell me why im getting the fasics and how to stop them as every fasic i have i believe i am sick! No matter what my emg said.
 

lgelb

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You're right, we don't know exactly why some people get BFS and others not...we similarly don't know that answer for ALS, colds, and many other things. And you're also right that your doc can't completely stop benign fascics without likely oversedating you.

Life is full of unknowns and annoyances. Yours are a very small fraction of what P/CALS endure. And, even better, you control your success in dealing with those facts of life. If you seek counseling as suggested, you will find a much larger world in front of you, with much less reason to worry.

You are indeed "sick," but with health and generalized anxiety, and possibly panic disorder, among other things, not ALS or anything like it. Your losses this year, for which I am sorry, may be contributors as well, since they are understandably on your mind.

If you cannot believe a normal EMG, that only illustrates just how ill you are. We cannot treat you from here. Google is no substitute, either. Find someone on the ground you can trust to talk with. It's worth it.

I am closing this thread, because further discussion will only delay your receiving the help you need. All the best.
 
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