Weird symptoms and I am scared

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Hiitsme

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I’ve been having these symptoms for over 4 years now I think, I actually did talk to neurologist back in 2017 but I had hard time explaining my symptoms because I didn’t know what was happening to my body all I know was I was sick. I didn’t wanna think about it because my MRI of brain and cervical spine looked normal but it’s gotten to the point where I have to talk about this because this is affecting my life and my anxieties.

I get an extreme muscle pressure, twitches all around my body though it’s not that extreme, Extreme urge to move my muscles, it’s as if it wants to move naturally while it’s suppose to be resting like tics and Tourette’s but able to full control it while conscious i have to have my mouth open because if i close it i can feel the pressure inside my mouth face etc teeth, finger chattering happens naturally but I can control it when I am conscious and aware of it it feels weird controlling them because chattering wants to happen naturally. I am always fatigued maybe because of that.

My hands and legs are always in a weird position naturally curled up and fingers curled inwards , always find my legs crossed one top of another while in bed and hands on my chest head some unusual spots naturally. Like I get too tired to hold up my phone while in bed instead place hand on bed instead of lifting it up so my muscles are not in use. I don’t know if the term is called spasticity because I am pretty flexible and when I am conscious I can control it and place it anywhere and function like any normal person. I guess that’s what you call muscle weakness but I can do normal activities like before eat speak and sleep sideways.

I have shortness of breath also, it feels like as if I have to force myself to breath, like it doesn’t work naturally, If I lay flat and try to take a deep breath it feels like my whole chest is going to collapse even though I don’t have any heart lungs problems therefore I sleep sideways hands on my chest. Lot of these symptoms looks like there’s a problem in muscle or nerves. And I am scared it could be ALS. I can function like normal person right now but I am afraid someday that I won’t be able control these weird muscle movements. I can sense the little details happening in my body.

I want to say that these symptoms started in mid 2017 roughly been 4 years. i am going to be 23 years old this august. It started as a discomfort in a chest, unable to sleep flat because of the heavy pressure on my chest, i had done 3 x-rays so far and endoscopy( 2017) Ecgs and numerous blood test regarding the symptoms i was having, everything came out normal, except the recent x ray i did, i had covid pneumonia besides everything was normal. its been about 3 months since the last xray i did. And something elevated in kidney since the doctor wasn’t too worried about it I am fine I guess. Regarding the endoscopy i am sure the doctor said everything was normal but i had the h pylori virus but never took the medicine for.

Little in-depth explanation of what I meant by extreme urge to move my muscle This is where it gets tricky, After the first xray in 2017 which came out normal, i started having muscle tightness all over my body, like this may sound crazy but I probably look like a zombie if i don't control my muscle/body movements, this happens everywhere in the body. Naturally your muscles in your body wants to rest but for me if i don't control it, i get an extreme urge to move my muscles/body like tics and tourretes but once again when i am concious and aware i am able to fully control it and not think about it.

Its like your brain is not telling you to do stuff, but it comes to you without thinking for example when you say random words without thinking. Now imagine random movements like kicking something punching something rotating your head moving you hands eye mouth etc. it doesn't happen in specific pattern. I don’t know if it happens to every person or just me, i know this sounds like the craziest stuff but This is how i know this is real, typically when you are in sleep paralysis your whole body is paralysed but i experienced it once that my whole body was doing the weird movements while my whole body was paralysed and i was unconcious unable to control these movements because i was in sleep paralysis been experiencing sleep paralysis when i was a kid and the weird movements didn’t happen back then,

I don’t even know what’s happening to my body I don’t even know if it’s progressing, but as of now I can sense small little details happening on my body inside my brain like little jerks inside ur face head body etc, it’s only when I think about it when I am outside with my friend none of these senses are extreme as I don’t think about it. But the muscle tightness chattering and pressure is real. Movements I am able to control not the muscle tightness and weird senses that I feel.

I still don’t know how to describe my symptoms put it in small believable symptoms next time I see a doctor.
 
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lgelb

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I think you know none of this has anything to do with ALS. If you do not feel confident in your primary care physician, you can and should find another to work through this with. I would also ask about a sleep study to determine if you have abnormal movement during sleep, that could also affect your day, or another sleep disorder. It is also worth taking the H pylori medicine because otherwise your stomach can get worse and that may contribute to your feelings of chest tightness.

Best,
Laurie
 

Hiitsme

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I have also done sleep study, because I suffer from sleep paralysis and everything was normal but unfortunately I didn’t have an episode of sleep paralysis that night during the study. Thank you for your reply but I think I will make an appointment next week and ask them to refer me to neurologist for emg test, since I know for fact I have muscle nerves issue.
 

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Since you have a plan already, I suggest you follow that plan which is to be working with doctors. That is you only true course of action. We can't really add anything to the discussion, but you could report back once you have been examined by a neurologist. I truly wish you the best.
 

Hiitsme

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Thank you so much, Just realized the pressure inside my face is my tongue twitching and spazzing like crazy, I accidentally stuck out my tongue while I was watching myself in the mirror, the twitches or spasm are all over my face now when stretched but the crazy tongue Fasciculation is always there even at rest. I was having this symptom for a very long period of time, I just ignored it because of the clean mri I had 4 years ago and I didn’t wanna google stuff until it was too much.

I just can’t find a comfortable posture while sitting, standing, sleeping. I have to constantly move my muscle to find a comfortable spot like legs crossed and hands crossed around my chest etc.. I can’t hold objects for a very long time it tires me easily. Tight muscles all around my body. I can sense the nerve cracking noises in my fingers and foot when stretched as well. What scares me is that I did the cmp test and doctor said I had a low creatine-blood, heard low creatine is associated with muscle problems. Mine was 0.65 where as the normal range was from 0.73 to 118 mg/dL.

I am sorry for writing again I am very worried, this is what googling does that is why I ignored my symptoms for a very long period of time. ALSO, I was wondering if it would be a good idea to make a Neurologist appointment and primary care appointment at the same time, I wanna make an appointment with my primary care first but even if she refers me to neurologist, I would have to probably wait for like a month to be able to see my primary and another couple months for neurologist. I was wondering how do you make an appointment with neurologist without any referral, do you google them based in your city and call them etc, this is my first time doing this so I do not know how, any input would be greatly appreciated.

Thank you once again and keeping all the people that are diagnosed with this terrible disease in my prayers.
 
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What if the issue is not neurological? You'd be wasting your time with a neuro if so. It's really important to let your doctor direct the avenue of exploration. By all means, make an appointment with your gp and let them know your symptoms and get a clinical exam, but guessing what type of specialist you should see based on speculation and worry is probably not the healthiest thing for your anxiety.
 

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Simply go see your PCP and work with them. Please, do not google, scare yourself, then instead of seeing a doctor, ask terminally ill people to calm you down. Just stop a moment and think about that.
4 years in, this is not the place for you. Please don't just turn it around to ask more questions.
 

Hiitsme

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Went to pcp exactly about a week ago, told her about the tongue and muscle twitching , she didn’t even look at my tongue, just referred me to neurologist without any diagnosis, she said they would call me for an appointment been a week now, no call so far, I don’t know what to do at this point. I do not know how to make an appointment with neurologist without any referrals since I haven’t gotten a call from anyone. If anyone of you guys have any ideas that would be great. Thank you.

Btw are there also twitching in fingers (shaky), eyelid muscles and facial muscles in als, I have just noticed the twitching is everywhere, on fingers when I slightly bend or straighten it, eyelid muscle when I close my eyes, in tongue when I stick it out, and in face when I try to make a face. I can’t even move my left arm without it making a cracking noise every time I use it. Sorry for bothering again just wondering if anyone had any of these symptoms I wasn’t on this forum for a week and noticed my fingers twitching and guess what I am back here again, just wanted an appointment with neurologist, but haven’t gotten a call. So I am asking again what would be the 2nd choice, find a neurologist based on your location and try to contact them. I am clueless when it comes to this sort of thing sorry again :(
 

lgelb

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You can self-refer to a neuro unless your plan requires the PCP to do it. If the latter, nicely ping the PCP's office. They can do hundreds of referrals a week, so sometimes it's not instant, or they can tell you to whom they referred you and you can follow up. Regardless, ALS is not a concern.
 

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You need to stop this now I think.
You should have read this, but it is worth reading again as we can't sit and read every word and answer in detail.
We can say that it is really not sounding like ALS, I'm sure you know that in your heart though.
So read here, then talk to your doctor again and stop reading here so that you get the help you need most.
 

Hiitsme

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Quick question, how do I self refer to neuro without referral, I was referred but I was told it would take about 2-3 months for the July referral to be caught up, then probably some extra months for the appointment, but my health is declining my left hand is just bones now can barely lift anything up due to muscle wasting, eyes just doesn’t stop twitching when I close it, makes it very difficult to sleep, jaw tremors pressure won’t let my tongue rest and too much shaking, Ear noises pretty much sums up symptoms except I have muscle wasting on my left arm, I am sorry for bothering again, but there should be a way to be able to see a neurologist without having to wait for 3,4 months. What would you guys recommend, or is there even a way to be able to see the neurologist without having to wait that long, how do you self refer if anyone has done so, so you could avoid that time length. Wondering if anyone has any some sort of advice. Thank you.
 

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You can try calling yourself. I am somewhat confused by what you said about catching up? Is it that the pcp’s practice takes 2-3 months to send? If so you can call and explain to whatever neuro it is but they may or may not accept patients without a doctor saying they are needed. This is individual and separate from an insurance referral. If your pcp thought there was concern this wouldn’t be happening though
 

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I am very convinced at this point, don’t want to delay on medications I guess, PCP referred me to neuro exactly 2 weeks ago from today, told her about the tongue twitching, but didn’t mention the muscle wasting and weakness on left arm ,thought it was because of inactivity but it’s only getting worse, called for an appointment to see pcp today because of the huge referral dilemma, the nurse told me to call the neuro whom they referred me to, called them and they said it would probably take about 2,3 months to be seen by neurologist because they haven’t caught up on the Julys referral , and I am here struggling to lift my left hand. Btw I meant link this link on the above mentioned post Ear Knocking & Eyes Twitching, PLEASE HELP!
 

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That person did not have ALS in spite of the post that claimed they were diagnosed. There were posts elsewhere as the last post in that thread says. I did not just accept their word but went to the German forum and read and it was true that the op was deceiving us

it is normal to wait for a neurologist. I had to wait 2 months for mine and it was not a pandemic, I was a documented FALS carrier and I had an abnormal emg from a research study.
 

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If things are as bad as you report, you would go back to your PCP and show the rapid progression of your symptoms and if things truly are as dire as you fear, they would speed up the referral process. However, as Nikki says, you don't just get an appointment a week later. You can also ask to go on a cancellation list. But I strongly suggest you seek advice from your PCP - if your symptoms are what you report they will be evident to the PCP as a matter of concern. If the PCP is not concerned there is advanced progression, you can relax and start working on a strategy to look after yourself while you wait.
Posting here in a panic will not help however, you need medical advice and examination.
 
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