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Deku Stick

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Learn about ALS
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Oslo
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Hi everyone, thanks for letting me join the forums. :smile: 31 year old male here.

My story begins in the end of february, before this my only health issues were constantly feeling a bit tired and some back pains I've been having for some while. After february my body has been acting up in several new ways and I've been in and out of the doctor's office. I have no idea what is happening to my body. Sorry about the long post, just getting things off my chest and I'm at a loss now so I'm just mentioning everything that's "new" these last few months.

My first issue was an aching shoulder muscle, I didn't give it much thought, but it's still aching today, it only bothers me at work and gets better when I relax.

My second issue was my throat and it's what caused me to look more into my problems. The lower part of my throat feels tight, it feels like a strain to talk and sometimes when I swallow I get the feeling of having swallowed too much, but I don't feel like I have much trouble swallowing. My jaw is also quite stuff, I suspect it might be from the tight throat. Went to an otolaryngologist and only thing he could find was my throat being red and acid reflux. Did a gastroscopy without finds. I'm often thirsty and mouth is dry.

Fast forward a month and my hands start acting up. This in combination with the throat issues is what alarmed me to ALS. My hands feel very stiff and I have problems typing texts on my cell phone because the fingers are so clumsy. My fingertips feel numb. The feeling is identical in both hands. I haven't lost any function, just harder to do it.

My muscles feel tired a lot quicker now, even just walking up a set of stairs my leg muscles feel tired. The inner junction of my elbow is aching as well, and my neck gets tired quickly. I feel like my muscles have lost some mass, in total I've lost 3 kilos these past months. I should mention that I haven't had the biggest appetite because of the throat issues.

Twitching started about three weeks ago, the twitching happens all over the body, but mostly the legs. In the legs I can clearly see the skin moving all over the place even if I don't feel the twitch.

Breathing issues, this also started early. When I wake up in the morning there's a pressing feeling in the middle of my chest, and my breathing is heavy. The feeling is worse when I've had a good night's sleep and good when I haven't had much sleep at all. I've been to a lung doctor and actually did a lot of tests today, he couldn't find any issues with my lungs or heart. No allergies, no astma.

So yeah, my hands being stiff and clumsy, my throat sensation as well as the excessive twitching is what brought me here in the end. Obviously there's something wrong with me, but I don't know what. Seeing a doctor on the 6th of June, so thought I would post here in the meantime. :)
 

Deku Stick

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Joined
May 25, 2018
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Reason
Learn about ALS
Country
NO
State
Oslo
City
Oslo
Any opinions about this one? Sorry, I'm just feeling worried. If you have any questions for me, feel free to ask them.
 

KarenNWendyn

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Hi Deku,

It doesn't sound like ALS. Burning, aching, and tightness are sensory symptoms and would be inconsistent woth ALS.

The constellation of symptoms makes me think something autoimmune might be a possibility. The throat symptoms might also suggest reflux, particularly if you have been taking antiinflammatory medicines for pain.

Since you have an appointment coming up with your doctor, you should get some answers soon. A good physical exam should also answer alot of questions.
 

lgelb

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Agree with Karen, Deku, and do ask the doctor you see on the 6th specifically what might help you feel better relative to the reflux. It can bear not only what you feel during the day, but it can interfere with your sleep and breathing, leading to some of the issues you cite.

If you are just taking over-the-counter medication or trying to watch your diet, there is likely better advice and treatments s/he can offer.

Best,
Laurie
 
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