Could this be ALS?

[Outlander2024]

Hello. I have been lurking on this forum for about 5 weeks. I am a 44 year old woman with a husband and two children. Please know that I have read the PLEASE READ stickies, more than once as I seek reassurance regarding my symptoms. It started with continuous twitching in my left thigh. That later spread to both thighs, calves, my right arm, shoulder and hand/thumb. I have also developed occasional twitched in my neck and right side of my jaw. I have no weakness in my legs, arms, or hands that I am aware of. I have had neck pain for about 2 years, but I assumed this was due to poor posture / tech neck.

I saw my PCP initially who did a full blood work up. Everything was normal except for slightly low Vitamin D. As my twitching continued and my anxiety became overwhelming, my PCP ordered an MRI of both my lower lumbar spine and cervical spine. He also put me on Clonazepam due to my increasing panic attacks. I just got my results today. I'm absolutely devastated as the cervical MRI reads to me like I do have MND. The report states "Motor neuron disease suspected", but I can't tell if that is part of the results or just what my PCP wrote as part of his order for the MRI. I haven't yet heard back from my PCP as the results just came back on my portal. I have an EMG scheduled for Aug. 26.

Here is the MRI report:
EXAM DESCRIPTION: MRI CERVICAL SPINE WO CONTRAST
REASON FOR STUDY: Motor neuron disease
Motor neuron disease suspected
TECHNIQUE: Sagittal and Axial imaging includes T1, T2, STIR and gradient echosequences.
COMPARISON: None available.
FINDINGS:ALIGNMENT: Reversal of the normal cervical lordosis. Mild anterolisthesisof C2 on C3.
VERTEBRAE: No acute compression fracture in the cervical spine. If traumais suspected then a CT has higher sensitivity for spinal fractures and can beobtained as clinically indicated. Mild endplate degenerative changes andmarginal spur formation.
DISCS: Multilevel mild disc desiccation and height loss.
HARDWARE: None in the spine.
CORD: Suboptimally visualized due to pulsation related artifact. No grossT2 hyperintense cord signal alteration is reproduced on 2 separate sequences.If there is high suspicion for cord pathology then consider repeat imagingwith acquisition of additional axial T2 weighted sequence.
INDIVIDUAL LEVELS:
C2-C3: Anterolisthesis of C2 on C3 with unroofing of the disc. No significantspinal canal stenosis. Uncovertebral spurring and left-greater-than-rightfacet arthropathy. Mild-to-moderate left and no significant right neuralforaminal narrowing.
C3-C4: Posterior disc osteophyte complex flattens the ventral thecal sac.Dorsal CSF cleft is maintained. Uncovertebral spurring and facet arthropathywith mild-to-moderate right and left neural foraminal narrowing.
C4-C5: Posterior disc osteophyte complex without significant spinal canalstenosis. Uncovertebral spurring and facet arthropathy with mild-to-moderateright and minor left neural foraminal narrowing.
C5-C6: Minor disc bulge. No significant spinal canal stenosis. Uncovertebralspurring and facet arthropathy with mild right neural foraminal narrowing.Additional right neural foramen rounded 5 mm focus compatible with aperineural cyst.
C6-C7: Tiny central disc protrusion. Minor thickened ligamentum flavum. Nosignificant spinal canal stenosis. Uncovertebral spurring and facetarthropathy with mild left and no significant right neural foraminalnarrowing.
C7-T1: No significant disc bulge, spinal canal or neural foraminal narrowing.
UPPER THORACIC: Incompletely imaged. No high-grade spinal canal stenosis.

IMPRESSION:
1. Multilevel mild cervical disc degeneration with uncovertebral spurringand facet arthropathy as described. There is no significant spinal canalstenosis.
2. Varying degrees of bilateral neural foraminal narrowing and additional findings as above.

 

[Nikki J]

It is absolutely what the ordering clinician chose to write

What the mri showed is summarized in the impression. It looks like you have some neck issues consistent with your history

MND is not diagnosed by MRI. Sometimes the radiologist will note something that could be related but in that case it would have been noted in the impression with a comment clinical correlation required. My cervical mri said exactly that.

I don’t know why your doctor put that in the order. They have to give a reason for insurance to pay it also should help the radiologist to know though mri reports are a record of what they see. This time they saw a spinal neck issue

 

[Outlander2024]

My EMG/NCS is scheduled for Aug. 26. However, it is taking place at an orthopedic center, not by a neurologist. Would this EMG be enough to look for ALS? Based on this MRI, I'm now wondering if I should push to be seen by a neurologist instead who can perform and EMG instead of having it done at the orthopedic center.

 

[Nikki J]

An emg is an emg it sees what it sees. I wouldn’t be surprised if it shows abnormalities in your arms that are coming from your neck SPINE issues.

YOUR MRI DID NOT SHOW A SINGLE THING THAT INDICATES ALS. The only reason mnd appeared in the report is your pcp put it in their order presumably because you brought it up. There is no other reason from what you said

 

[Outlander2024]

Thank you Nikki for your swift reply to my original post. I'm sorry it's taken me so long to say thank you. I was in a bit of a panic when I first posted. I never intended to post anything on this forum. I just intended to read and educate myself when I began having twitches. I never did hear back from my PCP regarding my two MRIs (upper cervical and lower lumbar), which came through on the portal.

My EMG (legs only) is scheduled for 8/26. I wish now that I had pushed for an upper, as well as lower EMG as my right hand and arm continues to twitch. I've had slight weakness in my right hand for about a year now, but has been getting steadily worse. I can still use it normally, but I've had decreasing grip strength and a stiff thumb that twitches when typing or using my hand a lot. I just dismissed it as arthritis or carpal tunnel syndrome. My PCP did a brief strength test on my hands and legs and said he didn't see any signs of weakness or atrophy in either that would indicate ALS. I guess I will just have to see what the lower EMG shows and go from there. I still intend to schedule an appointment with a neurologist for an exam on my hand/arm. I don't think I will find peace of mind otherwise.

Again, I just wanted to express my thanks to you for taking the time to reply to my post, and to all the PALS/CALS on this forum who so freely give up their precious time to reply to anxious information-seekers like me. Your patience and willingness to share your knowledge is very much appreciated.

 

[ShiftKicker]

Hi there-

It is absolutely enough for them to just check your lower extremities- you are reporting issues there, so anything concerning would be detected. The person conducting the exam can choose to do more if they need to, so there is no need to push anyone to do anything- they are medically trained and will make the appropriate decisions based on their findings.

Take care

 

[Outlander2024]

Hi there. I wanted to give an update since everyone here has been so helpful with advice and information. My EMG/NCS results were normal, from what the nurse told me and from I could understand from the report. I have not seen a neurologist though. My test was done at an orthopedic rehabilitation center by a physiatrist. I have no idea if he is board certified in EMGs, but he seemed knowledgeable enough. I am relieved of course. Unfortunately, my daily twitching continues unabated. In particular, the back of my left thigh and my right thumb. I also have, what seems to me, like slight weakness in that hand also. Maybe it’s BFS, maybe I have carpal tunnel in my hand. I just don’t know. I am choosing to believe my EMG results, that my symptoms are not related to ALS and put my anxiety behind me for now. Thank you all again for your replies, both to my own post and others. Your time, attention, and knowledge are very much appreciated.

Mods, please let me know if I didn’t attach my results correctly.

 

[Outlander2024]

I should add, the doctor performing the EMG ended up checking both legs, my right arm from shoulder to hand, back of my neck and lower back.

 

[Nikki J]

Thank you for sharing. The emg is perfect. Congratulations. A long and happy life to you

 

[lgelb]

100%. You might ask the physiatrist if they think PT would help your issues.