Chronic Fatigue Syndrome or NMD?

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!
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,332
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi there- have a read here if you haven't already: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

It sounds like googling twitching brought you here, but you also report all sorts of non-ALS symptoms. To be honest, I'd be wondering about post-viral syndrome. Were you tested for Covid? Regardless, unless your neuro states there is concern for ALS (which they seem to have unequivocally eliminated as a concern already), this forum is happily not the place for you.
 

JustCuff15

New member
Joined
Oct 19, 2020
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Baltimore
My neuro sent me for the EMG and NCS because of the constant muscle twitching and weight loss.

Tested for COVID. No antibodies.

I’m sorry to have offended you. I’ve read of patients needing several neuromuscular tests to rule out ALS.

In any event, thanks for your input.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,332
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Zero offense taken here! Not sure how you thought there was any!

Best of luck with your emg and ncs- please let us know how it goes. It might be important to continue looking for reasons for your listed non-ALS symptoms though, as there may be some relief to be found once you and your doctors figure out what has caused them.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,929
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I agree that I don't see ALS in this, but would suggest a chest X-ray if you haven't had one.

Best,
Laurie
 
Top