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New member
Feb 26, 2019
Learn about ALS
Los Angeles
Hi all,
First of all, thanks in advance to anybody who takes the time to reply to my post. I am a 32-year-old caucasian man currently living in Los Angeles. My symptoms started about 8 months ago with some intermittent muscle twitching that I noticed on and off in my neck, biceps, legs, all over really. I didn’t think too much of it until shortly thereafter I started to experience acute generalized fatigue and muscle fatigue. I felt extremely tired and my limbs felt heavy. On top of that, I was a bit lightheaded and overall something just felt off. I also was having some issues with shortness of breath, and some occasional strange episodes when trying to go to sleep which included trouble breathing, waking up with sweats, hot or cold sensations in my legs, dizziness, and restlessness. I’m aware these are not all indicative of ALS, but I’m including for reference. I went to a GP for the first time in almost a decade (long overdue, I know) and was diagnosed with hypertension and obstructive sleep apnea. I started taking 10mg of amlodipine for the high bp and was prescribed a CPAP for the sleep apnea, but never got started with it as the timing coincided with my wife having our first baby (almost 5 months ago now) and with the insane sleep schedule and the noise the machine made I didn’t think it was a great time to start using it. I should also note that prior to the birth of my child, I was a heavy binge drinker and smoker, both of which I quit cold turkey before my daughter arrived.

Anyhow, I seemed to be ok for a few months before and after my wife gave birth (October 17th, 2018) but just before new year the intense fatigue came back, and this time with more pronounced muscle weakness. The weakness is still more general than in one specific area, but I definitely notice it in my legs and shoulders the most. There is also an achiness that I get and can be in any muscle, and I have some joint pain with a lot of popping and cracking going on all the time. I am constantly exhausted, lightheaded, and just out of it. I then developed a sore/dry/swollen throat feeling which persisted and still persists (about 2 months in now). My voice changed because of it and is now low and raspy, and I’ve lost some range on either end. The throat issue coincided with the return of the twitching, which is now more intense than ever, and these symptoms combined are what got me thinking about ALS. Now, on top of all this, I am experiencing something peculiar which started in my right foot and ankle, and now seems to involve my leg. It started with the foot and ankle feeling a bit off, as if it were injured, or strained somehow, but I still retained a full range of motion. Now the feeling is in my calf as well, with some occasional muscle pain and cramping. I am wondering if this is because of some strain being put on certain muscles that are trying to compensate for another muscle that has lost strength, or if I am walking in some new strange way that is too subtle for me to detect? I should note that the twitching is also more frequent and stronger in my right thigh and calf than in other locations. I’ve also noticed my posture is very poor to a somewhat extreme degree. I feel like I am always resting my chin on my fist, or slumped over etc. I’ve been back to my GP several times and had almost every blood and urine lab under the sun - all clean. I mentioned all the illnesses that I was worried about (throat cancer and ALS being the two that brought the most anxiety) and she said she didn’t suspect either of those, but referred me to some specialists at my request. I saw an ENT and after he dismissed my cancer concerns, I specifically asked him about the possibility of nerve damage in my throat, which he did not believe was the case. Probably just anxiety, he said. My anxiety, I will admit, has skyrocketed since I’ve been having these symptoms.

I have an appointment in one week for an EMG and nerve conduction test, and I am trying to make a follow-up with a neuromuscular specialist. Sorry for what turned out to be such a long post, I just wanted to include all the relevant information. Thanks again for any replies and I will follow up with the EMG results when I get them.
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