Cc333
New member
- Joined
- Jun 12, 2021
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Dallas
Hello all,
I hate to be a bother to you all but my obsession is taking over. And for that I apologies to you, myself and family. I have been lurking on the forum for over a year now and i finally gave in to making a post...hopefully to get some insight.
My body started feeling different/off/lightheaded 2017/2018. I always chalked it up to allergies. My excuse for everything. The off feeling never went away and I would tell myself if it was serious then something would have happened by now. My way of coping, i guess.
February 2019 my mom went to the ER(pneumonia/she's fine) and it really messed me up. Never seen my mom so helpless and the thought of losing my mom killed me inside. My body went crazy the day she got to go home. My Symptoms at the time - random twitches/tight throat/resting my head on shoulder/awkward tight feeling in upper chest/zaps tingling all over body/non stop pulsating feeling in head/my collarbone is not even - left side sits lower than the other/when walking i would feel unsteady, like I could tell the ground was uneven if that makes sense...also thought i was dying especially when I got my 1st panic attack. Never experienced one before...Was told I have depression/anxiety. I fought hard that I didn't bc im a "man" and "tough". I can now honestly admit that i have it...im not tough.
I have seen:
ENT/Neurologist/orthopedist/rheumy/family dr.
After a plethora of blood test only thing to come up is HLAB 27(mom has ankylosing spondylitis) my symptoms did not match up to AS - according to rheumy.
EMG: done on left top of hand between thumb and pointer finger along with right calf muscles(multiple areas) - all normal.
NCS: also normal.
Cat scan: head was clean
Mri: cervical spine showed minimal neck issues on the right side. Did not explain left arm issues and begnin lesions on neck. Was told they are normal. Ppl have them all there lifes and never notice.
Through out all this my main worry became MND/ALS/PLS and all the other MND's that relate to ALS. It has taken control of my thoughts for a year.
After my last visit with my nuero(discussing emg results) we did the clinical exam again and all was good, she suggested I probably have Functional Neurological Disorder when I told her i felt some discomfort/odd sensation in my left elbow when performing strength test.
Symptoms continue - body twitching or fascilations/compared to right arm (dominant, my left arm is weak(shoulder girdle/shoulder blade/shoulder/elbow/wrist/ring finger and pinky finger) - it feels limp/light like its just a lifeless arm/an unstable sensation/i think there is atrophy on shoulder girdle. I always cary my arm like its in a sling or in my pocket.
Right ankle feels loose, like the ligaments/muscle on the out side of my ankle/leg arent firing as one unit. My toes feel loose too and they are less resistant to pressure. I can still walk on toes/heals. Passed the clinical strength exam and reflexes(twice). 1 normal EMG.
This was hard to post. I know its selfish i was just hoping you could provide some insight.
I hate to be a bother to you all but my obsession is taking over. And for that I apologies to you, myself and family. I have been lurking on the forum for over a year now and i finally gave in to making a post...hopefully to get some insight.
My body started feeling different/off/lightheaded 2017/2018. I always chalked it up to allergies. My excuse for everything. The off feeling never went away and I would tell myself if it was serious then something would have happened by now. My way of coping, i guess.
February 2019 my mom went to the ER(pneumonia/she's fine) and it really messed me up. Never seen my mom so helpless and the thought of losing my mom killed me inside. My body went crazy the day she got to go home. My Symptoms at the time - random twitches/tight throat/resting my head on shoulder/awkward tight feeling in upper chest/zaps tingling all over body/non stop pulsating feeling in head/my collarbone is not even - left side sits lower than the other/when walking i would feel unsteady, like I could tell the ground was uneven if that makes sense...also thought i was dying especially when I got my 1st panic attack. Never experienced one before...Was told I have depression/anxiety. I fought hard that I didn't bc im a "man" and "tough". I can now honestly admit that i have it...im not tough.
I have seen:
ENT/Neurologist/orthopedist/rheumy/family dr.
After a plethora of blood test only thing to come up is HLAB 27(mom has ankylosing spondylitis) my symptoms did not match up to AS - according to rheumy.
EMG: done on left top of hand between thumb and pointer finger along with right calf muscles(multiple areas) - all normal.
NCS: also normal.
Cat scan: head was clean
Mri: cervical spine showed minimal neck issues on the right side. Did not explain left arm issues and begnin lesions on neck. Was told they are normal. Ppl have them all there lifes and never notice.
Through out all this my main worry became MND/ALS/PLS and all the other MND's that relate to ALS. It has taken control of my thoughts for a year.
After my last visit with my nuero(discussing emg results) we did the clinical exam again and all was good, she suggested I probably have Functional Neurological Disorder when I told her i felt some discomfort/odd sensation in my left elbow when performing strength test.
Symptoms continue - body twitching or fascilations/compared to right arm (dominant, my left arm is weak(shoulder girdle/shoulder blade/shoulder/elbow/wrist/ring finger and pinky finger) - it feels limp/light like its just a lifeless arm/an unstable sensation/i think there is atrophy on shoulder girdle. I always cary my arm like its in a sling or in my pocket.
Right ankle feels loose, like the ligaments/muscle on the out side of my ankle/leg arent firing as one unit. My toes feel loose too and they are less resistant to pressure. I can still walk on toes/heals. Passed the clinical strength exam and reflexes(twice). 1 normal EMG.
This was hard to post. I know its selfish i was just hoping you could provide some insight.