Need help

Status
Not open for further replies.

Nzieli6486

New member
Joined
Jul 13, 2022
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
I'm back down the rabbit hole again and I feel like I'm not getting better. Can someone please help clear my mind for my sanity's sake? I had a previous post but here is the short version. Neurology findings

More or less, I have been having symptoms from around June 24th of this year. Started out as sitting on the couch crossing my legs and I stood up and my right leg felt funny. Felt like disconnected etc weird feelings along with muscle twitching and numbness and tingling. I have a bowel issue that started last year around October to where I have chronic diarrhea and loose stools daily. We are still uncertain about the reasoning for this..... I am going to submit a stool sample soon though. Fast forward to today. I have a lot of issues going on and could use some help. I have chronic neck pain and stiffness. I work on a computer all day and I'm trying to adjust my posture. When I smile, sometimes it makes my neck spasm out and my cheeks twitch.

Any muscles I flex in my body causes that limb to shake/tremble. If I abduct my hips it causes my legs to shake. If I flex my bicep and hold it, it shakes. Another weird thing, is when I flex my tricep, It will move under my skin like it's contracting and then not contracting constantly. This happens to my thigs and my triceps on both sides of my body.

Also my muscles are generally very tight throughout my body....... my neck feels heavy and tight as well. Arm muscles and leg muscles are tight. No indication of spasticity though.... since I have no range issues for motion

I also feel like my movements are sometimes janky... like I'm always on edge. Startled easily and I jump if I'm touched as well sometimes.

I have had MRI's, EMG, NCS, Clinicals etc.

I have bilateral brisk reflexes, full strength 5/5

Work up thus far:
2022 norma MRI brain w/wo, MRI C spine w/wo.
2022 normal CK, CBC, CMP, Mg, LGI-1 ab, CASPR2 ab, AchR Ab
2022 EDX study with only non-specific fasciculation to the right FDIa dn only mild neuropathic changes to the right triceps brachii and remainder of exam normal.

MOTOR
5/5 strength throughout BUEs and BLEs.

Muscle Tone and muscle bulk are normal in the upper and lower extremities. There are no fasciculations.

REFLEXES
Biceps: (R): 2+ (L): 2+
Brachioradialis: (R): 2+ (L): 2+
Triceps: (R): 3+ (L): 3+
Hoffman: (R): Present (L): Present

Patellar: (R): 3+ (L): 3+
Achilles: (R): 2+ (L): 2+
Babinski: (R): absent (L): absent

COORDINATION
Intact finger-to-nose, heel-to-shin. No tremor.

SENSATION
Intact to light touch, pinprick, vibration, and proprioception. Negative Romberg test.

GAIT
Routine gait is normal.


"At this time, leading diagnosis is Benign Fasciculation Syndrome. No evidence of central or peripheral nervous system damage."

I am doing a follow up in January but there really hasn't been any changes to my symptoms. Some have changed and/or increased.

I now have pretty weird feelings in my toes and feet. Buzzing legs, twitching/moving toes. My knees are hyperextended when I stand which has me worried. I am trying to adjust my posture at work and a few other things.

Just wanting some peace of mind again!


Thanks everyone!
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
7,494
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello there-

You doctors' reports should be enough for peace of mind and no one on here would disagree with their findings. You might be better served to see a physiotherapist for strengthening and posture assessment and to also find someone to help you with anxiety if you're struggling with it day to day. I hope you'll be able to leave the fear of ALS behind as you work on fitness and find improvements with exercise.

Please take care
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,739
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Please, I kindly ask you to remember who your audience is here. The folks here are living with this horrific disease, and the caregivers here are dealing with the care is takes to help those living with ALS. You fall into neither category, yet are seeking people to soothe YOUR fears of having this disease, when you've already been cleared of it. That is not something forum members do; that is something for a psychologist to do.

I do wish you the best in getting help to let go of your ALS focus.

Take good care.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,976
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
No way will we argue against your extensive testing and examinations.
Please consider that you are asking the exhausted terminally ill and their carers to soothe your fears of what they are IRL dealing with.
Back to your doctors and admit that you have posted this here, maybe take a copy of it printed out.
Ask for help.
 
Status
Not open for further replies.
Top