bcc004004
Member
- Joined
- May 25, 2021
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- State College
Hello all,
Hoping to get some feedback from everyone. If you don't have time to read all this that's okay. But if anyone has the time, I would appreciate it. I am a 32 year old male with a wife and 10 month old beautiful son. Chemical engineer.
In 2015 I made a mistake. I got a prescription for Adderall/vyvanse because I thought it could maybe boost my productivity. In reality, it became abuse. I started off using it normally, but it evolved into taking up to three pills a day sometimes. I would normally run out of the prescription, and go cold turkey, only to have it refilled when the next month began.
In May of 2020, I had an incident where I was laying in bed and my heart rate spiked to 180 (on my watch). I thought I was having a heart attack. It scared me enough that I broke from the cycle of abuse and have not taken the medication since that day. Never will again. But since that day, I haven't felt okay. In fact I have felt like something is terribly wrong with me. I am having an issue every night where right before I fall asleep, right as I'm about to lose consciousness, my heart seems to do something, and it feels like I am suffocating. My heart rate spikes and I have to sit up to make sure everything is okay. When this happens it feels like blood "gets stuck" in my head.
I had a full cardiac workup, ct scan of chest, neck, head, echocardiogram, stress echo, all negative. I have had negative abdominal ultrasound. Brain MRI with small non specific hyperintensity in the periventricular white matter. Two neurologists have told me it is nothing to worry about. I was found to be thiamine deficient which is weird because I don't drink and I have a healthy diet. So I am on a thiamine supplement.
My legs ache at the end of the day and my heels burn. Something feels like it is hitting me in bouts, where I will be okay for two weeks, and then two weeks it feels like I'm dying. I normally walk four miles a day with my wife but last week my legs began to feel weak, and i couldn't stand to be in the heat, it felt like it was shutting my body down. I noticed two weeks ago one of my toes is twitching by itself. About the same time I noticed that it seems harder to do a calve raise on my left foot. I started having fasciculations visible in my calves primarily left calf, then it spread to the right.
I went and got an emg and nerve study done. The emg was clean, but the nerve study showed left ulnar motor nerve decreased conduction velocity at 51 m/s. left sural sensory nerve reduced amplitude (5.7 microvolts). right sural sensory, left median snesory, and the left ulnar sensory showed prolonged distal peak latency. right median sensory nerve showed prolonged distal peak latency and reduced amplitude. All remaining nerves within normal limits. All F wave latencies within norm. emg portion normal.
Several days after the test, the fasciculations broke out all over my body. Pretty much in every place except my tongue. And they are strong. Two days ago, my vision seemed dimmer, ears ringing, and legs felt like they weren't even there, and I went to the ER. They did a full brain and spinal MRI. No demyelinating lesions but did find mild bulge at c5-c6 with degenerative disc disease (mild). Mild stenosis in that location but insignificant. Also find mild disc disease in the lumbar lower back area.
Given the weakness I feel in my left leg, and body wide twitching, I am worried I have ALS and that I simply haven't seen a neuro who recognizes it yet. I have read several messages on here where people with ALS have experienced the growing weakness in calf, twitching, and disc disease.
Questions I have, is it possible that ALS can cause disc disease? My back only started hurting six months ago, came out of no where. Are muscles in my back weakening, and compromising the structure of my spine? Would an emg have picked something up when only my calves were twitching at the time? Can als cause burning heels? Lastly, in the last few months, it seems like every part of my body "falls asleep" more easily. My pinky and ring finger, or weird portions of my legs like my knees will fall asleep. Can ALS indirectly effect sensory? Can stimulant abuse trigger ALS?
The thought that I maybe have this disease, and acquired it from my own bad decisions and mistakes, haunts me. The thought that maybe I did this to myself, and to my parents, and wife and son. Scares me to death. I can't function right now. Please someone help.
Hoping to get some feedback from everyone. If you don't have time to read all this that's okay. But if anyone has the time, I would appreciate it. I am a 32 year old male with a wife and 10 month old beautiful son. Chemical engineer.
In 2015 I made a mistake. I got a prescription for Adderall/vyvanse because I thought it could maybe boost my productivity. In reality, it became abuse. I started off using it normally, but it evolved into taking up to three pills a day sometimes. I would normally run out of the prescription, and go cold turkey, only to have it refilled when the next month began.
In May of 2020, I had an incident where I was laying in bed and my heart rate spiked to 180 (on my watch). I thought I was having a heart attack. It scared me enough that I broke from the cycle of abuse and have not taken the medication since that day. Never will again. But since that day, I haven't felt okay. In fact I have felt like something is terribly wrong with me. I am having an issue every night where right before I fall asleep, right as I'm about to lose consciousness, my heart seems to do something, and it feels like I am suffocating. My heart rate spikes and I have to sit up to make sure everything is okay. When this happens it feels like blood "gets stuck" in my head.
I had a full cardiac workup, ct scan of chest, neck, head, echocardiogram, stress echo, all negative. I have had negative abdominal ultrasound. Brain MRI with small non specific hyperintensity in the periventricular white matter. Two neurologists have told me it is nothing to worry about. I was found to be thiamine deficient which is weird because I don't drink and I have a healthy diet. So I am on a thiamine supplement.
My legs ache at the end of the day and my heels burn. Something feels like it is hitting me in bouts, where I will be okay for two weeks, and then two weeks it feels like I'm dying. I normally walk four miles a day with my wife but last week my legs began to feel weak, and i couldn't stand to be in the heat, it felt like it was shutting my body down. I noticed two weeks ago one of my toes is twitching by itself. About the same time I noticed that it seems harder to do a calve raise on my left foot. I started having fasciculations visible in my calves primarily left calf, then it spread to the right.
I went and got an emg and nerve study done. The emg was clean, but the nerve study showed left ulnar motor nerve decreased conduction velocity at 51 m/s. left sural sensory nerve reduced amplitude (5.7 microvolts). right sural sensory, left median snesory, and the left ulnar sensory showed prolonged distal peak latency. right median sensory nerve showed prolonged distal peak latency and reduced amplitude. All remaining nerves within normal limits. All F wave latencies within norm. emg portion normal.
Several days after the test, the fasciculations broke out all over my body. Pretty much in every place except my tongue. And they are strong. Two days ago, my vision seemed dimmer, ears ringing, and legs felt like they weren't even there, and I went to the ER. They did a full brain and spinal MRI. No demyelinating lesions but did find mild bulge at c5-c6 with degenerative disc disease (mild). Mild stenosis in that location but insignificant. Also find mild disc disease in the lumbar lower back area.
Given the weakness I feel in my left leg, and body wide twitching, I am worried I have ALS and that I simply haven't seen a neuro who recognizes it yet. I have read several messages on here where people with ALS have experienced the growing weakness in calf, twitching, and disc disease.
Questions I have, is it possible that ALS can cause disc disease? My back only started hurting six months ago, came out of no where. Are muscles in my back weakening, and compromising the structure of my spine? Would an emg have picked something up when only my calves were twitching at the time? Can als cause burning heels? Lastly, in the last few months, it seems like every part of my body "falls asleep" more easily. My pinky and ring finger, or weird portions of my legs like my knees will fall asleep. Can ALS indirectly effect sensory? Can stimulant abuse trigger ALS?
The thought that I maybe have this disease, and acquired it from my own bad decisions and mistakes, haunts me. The thought that maybe I did this to myself, and to my parents, and wife and son. Scares me to death. I can't function right now. Please someone help.
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