MishaTarkus
New member
- Joined
- Nov 11, 2024
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- VA
Good afternoon.
I'm a 26M (Yes, I know) that started having respiratory issues back in May 2024. I would wake up gasping or with a start with no explanation. A few days later this happened again, but I kept involuntarily gasping for hours after waking up.
Did cardio, pulmonary and general check up. Everything came back normal but some slightly high blood pressure for my age. Started taking some meds. OK.
Soon after I get full time dyspnea. Improves with exercise at first, later at all times. Sleeping on my side or elevated helped. Doctor thought maybe stomach acid and have me anti acids. No help. Albuterol didn't do anything either.
Had a sleep exam scheduled, but couldn't do it in time due to severe scheduling problems. I don't realize at the time, but a few months later I start inexplicably waking up at night, sometimes with very numb hands.
Last month or so, I start having these pulses on my left foot. Then they turn into pain, neuropathic, brief stabs. I get checked for blood sugar issues. No such thing. I get used to them. This whole period, despite meds, BP remains somewhat high.
I run for my exercise, and I'm getting some PRs a week later, then suddenly... Incredible exhaustion on my legs. Breathing is also making it difficult to run well too. I notice my heartbeat can be seen clearly through my chest when I'm lying down, and my hands and feet feel veinier. Whatever.
I take a break from running for a few days, but strangely my calves feel entirely locked up a few days *after*, suddenly. They are firm, not swollen. A few days later, they loosen, but they return loose. Flaccid, don't tense as well as they used to.
I schedule a neurologist visit. Over the course of the next few days, my back feels sore when lying down, sitting becomes unconformable, I realize one of my thigh muscles is smaller than the other, my legs start to feel heavy, my throat/trachea feels squishy and soft. I go to the doctor.
He schedules an emg for January, tests me physically, says he doesn't see weakness or atrophy but some hyperreflexia on my left knee. We get mild elevation on cpk (340), normal CNP and sed rates. Low vitamin D.
I go home and start getting fasciculations on my left leg. My muscles seem to be getting smaller, but I'm so muscular it's not obvious. My arms and back feel squishy to the touch even when I try to tense them and my hands feel uncoordinated and uncooperative, but I can still do buttons. My swallowing becomes worse, I burp after drinking water. I can't find a good position to sleep - my throat feels squishy inside. My legs feel weak and heavy, and I can't type because my arms feel heavy. I can't sleep.
I beg him to do an emg *now*. He does, but only in my right arm and leg, which never had twitching. He says they look normal and to relax, orders some lyme and myasthedia tests.
I try to relax but a few days later get the actual report.
"
NCV & EMG Findings:All nerve conduction studies (as indicated in the following tables) were within normal limits.
Needle evaluation of the right vastus lateralis muscle showed slightly increased duration, slightly increased motor unit amplitude, and diminished recruitment. All remaining muscles (as indicated in the following table) showed no evidence of electrical instability."
That's not a clean EMG!! That's a classic sign of *early ALS*, and it's in a muscle that is clearly smaller than it's other half on my non dominant leg.
My weakness continues getting worse. I can barely sit in chairs, I'm walking with a limp. I use an oxymeter at night and realize that often my oxygen is dipping into the 80s - one time I catch it at 79. My average while awake is 96.
Doctors still aren't taking me seriously, but I don't see anything else it could be. I'm afraid I'm going to die without a diagnosis. My back feels completely smooth, and my butt feels like it's not there.
I feel hopeless. I just got married, I'm 26.
I'm a 26M (Yes, I know) that started having respiratory issues back in May 2024. I would wake up gasping or with a start with no explanation. A few days later this happened again, but I kept involuntarily gasping for hours after waking up.
Did cardio, pulmonary and general check up. Everything came back normal but some slightly high blood pressure for my age. Started taking some meds. OK.
Soon after I get full time dyspnea. Improves with exercise at first, later at all times. Sleeping on my side or elevated helped. Doctor thought maybe stomach acid and have me anti acids. No help. Albuterol didn't do anything either.
Had a sleep exam scheduled, but couldn't do it in time due to severe scheduling problems. I don't realize at the time, but a few months later I start inexplicably waking up at night, sometimes with very numb hands.
Last month or so, I start having these pulses on my left foot. Then they turn into pain, neuropathic, brief stabs. I get checked for blood sugar issues. No such thing. I get used to them. This whole period, despite meds, BP remains somewhat high.
I run for my exercise, and I'm getting some PRs a week later, then suddenly... Incredible exhaustion on my legs. Breathing is also making it difficult to run well too. I notice my heartbeat can be seen clearly through my chest when I'm lying down, and my hands and feet feel veinier. Whatever.
I take a break from running for a few days, but strangely my calves feel entirely locked up a few days *after*, suddenly. They are firm, not swollen. A few days later, they loosen, but they return loose. Flaccid, don't tense as well as they used to.
I schedule a neurologist visit. Over the course of the next few days, my back feels sore when lying down, sitting becomes unconformable, I realize one of my thigh muscles is smaller than the other, my legs start to feel heavy, my throat/trachea feels squishy and soft. I go to the doctor.
He schedules an emg for January, tests me physically, says he doesn't see weakness or atrophy but some hyperreflexia on my left knee. We get mild elevation on cpk (340), normal CNP and sed rates. Low vitamin D.
I go home and start getting fasciculations on my left leg. My muscles seem to be getting smaller, but I'm so muscular it's not obvious. My arms and back feel squishy to the touch even when I try to tense them and my hands feel uncoordinated and uncooperative, but I can still do buttons. My swallowing becomes worse, I burp after drinking water. I can't find a good position to sleep - my throat feels squishy inside. My legs feel weak and heavy, and I can't type because my arms feel heavy. I can't sleep.
I beg him to do an emg *now*. He does, but only in my right arm and leg, which never had twitching. He says they look normal and to relax, orders some lyme and myasthedia tests.
I try to relax but a few days later get the actual report.
"
NCV & EMG Findings:All nerve conduction studies (as indicated in the following tables) were within normal limits.
Needle evaluation of the right vastus lateralis muscle showed slightly increased duration, slightly increased motor unit amplitude, and diminished recruitment. All remaining muscles (as indicated in the following table) showed no evidence of electrical instability."
That's not a clean EMG!! That's a classic sign of *early ALS*, and it's in a muscle that is clearly smaller than it's other half on my non dominant leg.
My weakness continues getting worse. I can barely sit in chairs, I'm walking with a limp. I use an oxymeter at night and realize that often my oxygen is dipping into the 80s - one time I catch it at 79. My average while awake is 96.
Doctors still aren't taking me seriously, but I don't see anything else it could be. I'm afraid I'm going to die without a diagnosis. My back feels completely smooth, and my butt feels like it's not there.
I feel hopeless. I just got married, I'm 26.