JustCuff15
New member
- Joined
- Oct 19, 2020
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MD
- City
- Baltimore
Hey All. Thank you in advance for your advice.
Started having night sweats and chills and fatigue in March of this year. Couldn’t ever get enough sleep. Quit my job. Neurologist guessed Chronic Fatigue Syndrome.
Then started having other symptoms. The one most troubling was muscle twitching. I ignored my body for months and looked in the mirror about 3 months after symptoms started, and I saw loss of muscle or fat around my waist where my pants sit. I noticed that I seemed to have lost muscle tone in my left arm and leg. No appetite at all. Tremors from time to time. Hot flashes and cold spells but no fever or drop in body temp. Severe shivers/trembling in cold.
Had an EMG and Nerve Conduction Study. Was told that I “100%” do not have ALS. This was three months after symptoms onset.
Had a remission of symptoms this summer, then they began again in September. Now 7 months from symptom onset. Twitches both sides of jaw, side of forehead, legs, back, and suddenly a flutter twitch in my right side where my diaphragm is. I’ve been pressing my tongue relentlessly against the roof of my mouth all day until it collapses at night from exhaustion. Kind of sucking it to an extreme. Noticed a slight shortness of breath too recently, but this followed a week of bronchitis and hacking cough. My throat turned red and blood started appearing from it. Throat and lung symptoms persist even a few weeks out from bronchitis. I am an occasional smoker of 20 years.
Throat is still red but not hurting. Have to swallow twice to get down most drinks and food. Dry mouth and excessive saliva at times. Voice is hoarse. Talking seems like a chore (and has since symptom onset). Brain fog where I can stare without a thought going through my head for long periods of time. Been experiencing low potassium since last year despite good dietary choices/supplements.
No appetite still. Losing weight. Abdominal muscles look to be hanging/sagging off my chest. My body is still unrecognizable from last year. I took an antipsychotic known for its appetite boosting side effect. I gained weight but appetite dissolved when I came off because of 35 lbs weight gain.
Will be having another EMG and NCS soon. Any thoughts on whether these symptoms match your experience? TY!
Started having night sweats and chills and fatigue in March of this year. Couldn’t ever get enough sleep. Quit my job. Neurologist guessed Chronic Fatigue Syndrome.
Then started having other symptoms. The one most troubling was muscle twitching. I ignored my body for months and looked in the mirror about 3 months after symptoms started, and I saw loss of muscle or fat around my waist where my pants sit. I noticed that I seemed to have lost muscle tone in my left arm and leg. No appetite at all. Tremors from time to time. Hot flashes and cold spells but no fever or drop in body temp. Severe shivers/trembling in cold.
Had an EMG and Nerve Conduction Study. Was told that I “100%” do not have ALS. This was three months after symptoms onset.
Had a remission of symptoms this summer, then they began again in September. Now 7 months from symptom onset. Twitches both sides of jaw, side of forehead, legs, back, and suddenly a flutter twitch in my right side where my diaphragm is. I’ve been pressing my tongue relentlessly against the roof of my mouth all day until it collapses at night from exhaustion. Kind of sucking it to an extreme. Noticed a slight shortness of breath too recently, but this followed a week of bronchitis and hacking cough. My throat turned red and blood started appearing from it. Throat and lung symptoms persist even a few weeks out from bronchitis. I am an occasional smoker of 20 years.
Throat is still red but not hurting. Have to swallow twice to get down most drinks and food. Dry mouth and excessive saliva at times. Voice is hoarse. Talking seems like a chore (and has since symptom onset). Brain fog where I can stare without a thought going through my head for long periods of time. Been experiencing low potassium since last year despite good dietary choices/supplements.
No appetite still. Losing weight. Abdominal muscles look to be hanging/sagging off my chest. My body is still unrecognizable from last year. I took an antipsychotic known for its appetite boosting side effect. I gained weight but appetite dissolved when I came off because of 35 lbs weight gain.
Will be having another EMG and NCS soon. Any thoughts on whether these symptoms match your experience? TY!