The last 6 months have been very frightening as I try to figure out what's going on with me. I appreciate anyone's input on my symptoms.
First symptoms started about 6 months ago when I noticed trouble breathing during the onset of sleep. I would exhale, and my body felt like it had no reflex to initiate the next breath. A very intense "distress signal" (the best I can describe it) would arouse me from sleep gasping for air. The best way I can describe them is comparable to when you're flying on an airplane and the plane drops suddendly. You get that intense nervous feeling in your chest. My body was starving for air and my brain was sending all kinds of emergency signals to wake me up.
These episodes came and went and I dismissed them up until 2 months ago when symptoms began to get worse.
Started noticing disabling fatigue during the day and muscle weakness in my left leg (the muscles around the knee cap). I barely could leave the couch I was so tired. One day I went for a walk to try and get some exercise and I almost passed out. I went to the hospital and all they preformed was an EKG (heart test) because I told them how tired I was all the time. They suspected heart failure I'm guessing but ruled that out and sent me on my way.
After the hospital, the night episodes became more frequent and intense and my muscles started fasciluating. My right quadricept twitches the most but these twitches would happen all over my body. I know ALS starts in one spot but stick with me. I followed up with my primary care and he agreed that my heart was fine, but wanted me to have an MRI to rule out Multiple Sclerosis. My MRI came back negative for MS and I was sent down to San Diego (where I go to school) to continue my semester. I did not have ANY diagnosis other than I was worrying too much about nothing.
Since being down at school the night episodes have continued as well as the muscle twitching. I wake up every morning and my entire body is trembling. The trembling stops as soon as I get up and walk around but I get various muscle twitches throughout the day. Also noticing that it's been more difficult to breathe during the day. No matter how deep a breath I take, it feels unsatisfying. Also, the emergency signals at night that I described earlier have been accompanied by new signals in my brain. They start above the roof of my mouth and shoot to the front of my head between my eyes. My head slumps over for a second and it feels like my brain is short circuting. This is usually associated with a violent leg jerk or some othe brief body motion that wakes me up. I told my neuro about this and he suspected some kind of seizures, but didn't know what was causing them.
I followed up with 2 neurologists in San Diego to start looking into more neurological disorders. One small practice, (Dr. Aquatania) and UCSD neurological center. I expected UCSD to be much more thorough, but all they said was that my symptoms were psychosomatic, and I needed to see a psychiatrist. Dr Aquatainia was much more thorough, wrote down all my symptoms, and had me set up for a sleep study to see the episodes as they happen. I finally got a call from his receptionist this past friday night saying, "You have been diagnosed with severe sleep apnea." She said she would call me back with treatment details but never did.
Now I know that I do not snore (my girlfriend can verify), so my hunch is that I have Central sleep apnea which is when your brain does not send the signal to initiate breathing. This condition can be caused by ALS. I do not have heart failure (another big cause) or any other of the conditions that can cause this breathing problem (that I know of). Combined with the muscle weakness and twitching, I'm scared to death that ALS is the cause and that it has attacked my breathing first. I was prescribed xanax by my primary care to help me relax but my Neuro advised me to immidiately stop taking it since it can surpress your respiration even more while you sleep. The anxiety is killing me!
I am waiting anxiously until tomorrow so I can call my neuro and set up treatment right away for the central sleep apnea. I'm basically on here just to get your guys input on whether or not you think ALS is the cause. The UCSD doc and everyone else said I had nothing. I'm only 21 which I think is the main reason everyone has been telling me no about ALS. Thankfully Doctor Aquitania discovered that I have central sleep apnea which is a very serious condition. I wonder what would have happened had I never gone to him and just took my others doctors words for it. Anyone with any input at all would be extremely comforting to me as I try to get some sleep tonight.
Thank you all and God Bless.