breathing/sleeping issues and other, please help.

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Tb12

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Hi guys,

hope you are having a good day.

here is my journey so far, to give you some insight, I really appreciate you taking your time to read this.

8- 10 years of progressive symptoms. I have had so much tests and seen so many neurologists and neuromuscular specialists and still no answers. I Have had 6 emgs in the first 4 years of Symtoms and nothing showed up, EMG only done on arms, legs, cheek. Last Neuro I saw in 2017, thought I might have MS due to my bladder symptoms, once that came back clear he was disinterested.

my Symptoms:
Fasciculations
Cramps
Weakness ( perceived, drs can't feel it on clinical, but I feel it )
Tremors under muscle stress, load
Nerve pain
Fatigue
Joint pain
Muscle tightness
Bladder issues/ bladder not emptying all the way/weak stream
sphincter weakness
Urological and sexual issues
sometimes my thumb on left hand has a mind of its own and doesn't do what I want it to do, like if I'm trying to text and it just isn't going to certain letters etc, only sometimes
Super low testosterone

New symptom started a year ago now, out of the blue about a year ago i kept waking up during sleep with what it felt like i was holding my breath, or a big sniff in would wake me up, or as I just dove off to sleep its like my body stops breathing and I'm aroused awake..

I was Diagnosed with mild sleep apnea and lung function was normal but low end, mild restriction shown. Put on cpap machine, doesnt help much, still waking up cause I'm not breathing, feels like my throat closes or my lungs etc just stop beathing and I'm aroused awake, or distorted breathing pattern feeling waking me up, or noise in throat. I do feel some breathlessness doing certain things.

I know its hard to explain via writing about how severe symptoms are, so I do want to add that I can still walk, talk, run, type etc and everything a healthy person can.

I'm very concerned this could be ALS?

thank you for your time
Trent.
 

Bestfriends14

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CALS
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27 messages over 6 years and still chasing ALS? No, you dont have ALS, but you do need to seek an alternative type of treatment, perhaps councelling.

Good luck to you and do try to be grateful for the life you have. You have what many on this forum would love to have-no terminal illness.
 

lgelb

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If you need CPAP and it isn't working well, find a sleep specialist (usually a pulmonologist, neurologist or psychiatrist who focuses on sleep medicine) who will work with you, Trent. You might need different settings, or perhaps BiPAP, which is gradually taking over the field. Lack of refreshing sleep, which relates to both quantity and quality, can affect potentially any physical or mental shortcoming you might come up with.

But yes, you're in the wrong place here, which is all good.

Best,
Laurie
 

KarenNWendyn

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Some previous threads:


Ditto what Bestfriends said. No ALS. I’m sad for you that you have spent so many years and so much time and effort chasing ALS when many doctors have done their best to reassure you you don’t have it. Why would random strangers on the internet be able to tell you differently?

Believe me, it’s not a disease you want. This is not a desirable club. Do yourself a favor and get counseling and treatment for anxiety and start living your life.

There’s really nothing more we can tell you. This forum is here primarily to support people with ALS, their caregivers, and people who have lost loved ones to ALS. We are not a general health or anxiety forum. I’m closing this thread. Please do not start another.
 
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