Scared of ALS, but could all be a big panic.

[Andrewbrooks]

Hi every one. For those of you battling this illness, you have my heartfelt thoughts and prayers. I am Andy, I am 48 and going through a lot of weird symptoms right now. I'm in a continual panic attack because of it. It is rubbish and stopping me from living.
I started with pneumonia back in February and never felt better since. Even when the pneumonia was gone, I felt weaker and more tired than ever. Them the numbness started in the face and arm which sent my to ER for a cat scan. Nothing to see. Sent home after HR and BP normalized. Then I started to find it difficult to walk, heavy legs with numbness around the kneecaps and thighs. Poor balance came concurrently and feeling vague, detached and lightheaded.
The insomnia started soon after, couldnt sleep without trazedone, now I am on ativan and effexor.
Then the shakes. All over my body, diaphragm is especially distressing as it affects breathing. I also cant sleep because my brain "pushes" me out of it. Pressure builds as I am at the point of falling asleep, and I awaken panicked with bad fasciculations throughout my body. Anyone else get this? It seems pretty rare and not like hypnagogic jerks. My body is numb, tired and I have lost 10-15lbs in 3 months. My appetite is poor because swallowing is Difficult and I feel like I'm choking sometimes. Got a brain/neck MRI and brain showed nothing. Neck showed some cervical myelopathy and stenosis. Also had an Emg and nerve conduction study which were also unremarkable. He did note brisk reflexes which were unremarkable. I note that my first fascics did not appear until after his emg. He only did one arm and one leg, did he miss it?
I would appreciate your feed back. Petrified its ALS, MS or CJD ( I'm from the Uk).
Thanks in advance. You are good people.
Andrew

 

[Nikki J]

Nothing sounds like ALS to me and your emg was normal.

It is usual to feel unwell for a period of time even after pneumonis is technically resolved.

How bad is the cervical myelopathy and which discs? What is the plan for this?

 

[Andrewbrooks]

Nikki
Thanks for getting back to me. From the MRI -
Findings at individual levels:

C2-C3: No spinal canal or neural foraminal narrowing.

C3-C4: Uncovertebral hypertrophy and facet arthropathy result in moderate right
and mild left neural foraminal narrowing. No spinal canal narrowing

C4-C5: Central disc protrusion indents the ventral thecal sac but does not
contact the cervical cord. Uncovertebral hypertrophy and right greater than left
facet arthropathy result in mild bilateral neural foraminal narrowing.

C5-C6: Large central disc protrusion contacts and deforms the ventral cord. No
cord signal abnormality. Spinal canal narrowing is moderate. Left worse than
right uncovertebral hypertrophic changes and facet arthropathy result in
moderate to severe bilateral neural foraminal narrowing. Findings are unchanged
from the previous study.

C6-C7: Right paracentral disc protrusion contacts and mildly deforms the
ventral cervical cord. No cord signal abnormalities. Spinal canal narrowing is
moderate. Uncovertebral hypertrophy and facet arthropathy result in severe
bilateral neural foraminal narrowing. Degree of neural foraminal narrowing as
progressed from the previous study.

C7-T1: No significant spinal canal or neural foraminal stenosis.
From the emg.

On exam he is a pleasant cooperative man who looks his stated age. He is somewhat overweight. Cognitively appears to be intact. Cranial nerves II through XII were intact. Sensory exam was normal. He had normal tone and no focal weakness or atrophy. His reflexes were quite brisk in the lower extremities more on the right than the left with downgoing toes and reflexes in the upper extremities were diffusely brisk. Gait and stance were normal. Romberg was negative. Cerebellar testing was intact.

He underwent some nerve conduction studies/all of which were unremarkable. There was no evidence of peripheral neuropathy.

MRI C spine 2016: Fairly tight stenosis in mid cervical spine.

Patient does have an exam suggestive of a myelopathy. I would like to obtain a repeat MRI of his cervical spine to evaluate the stenosis seen in 2016. I suspect that the traveling numbness from his left face down into his left leg may have been a migraine epi phenomenon. CT brain at that time was unremarkable.
Dont know the plan forward. They have me going to neuropsychologist as I write This.
Your thoughts,?

 

[KarenNWendyn]

Your doctor states s/he plans “to obtain a repeat MRI of his cervical spine to evaluate the stenosis seen in 2016.”
So was the MRI you report above the one from 2016 or the more current one the doctor wanted to get?

I’m sure the doctor will review the plan with you. Usually people with myelopathy are evaluated by a neurosurgeon to see if they’re a surgical candidate.

Forget ALS though. The clean EMG rules it out. EMG findings in ALS are widespread, so studying one arm and one leg is generally sufficient when evaluating for ALS.

 

[Andrewbrooks]

Ok thank you nikki. They have not been forthcoming in reports or information. I have had no discussions with the doctors since the emg or MRI's. Thank you for allaying my fears and best of luck, love and health to you.
Andy

 

[Andrewbrooks]

Oh and the MRI report is the latest one. The first one was for radiculopathy of the left arm. I shouldn't worry about brisk reflexes then? I feel anxiety and panic combined with sleep deprivation and immobility could cause 99% of the symptoms too.

 

[Andrewbrooks]

I also believe sitting in the house worrying could justify the 15lb weight loss in 2 months...

 

[KarenNWendyn]

Cervical spine stenosis can lead to brisk reflexes.
Keep working with your doctors about your concerns, but no evidence here for ALS or any reason for you to keep hanging around this forum.