ALS/EMG Advice

[Fasciculation1]

Hello. Thanks so much for your previous replies Laurie, Karen, and Kristina. I was able to get a copy of the finalized results of my completed EMG from last month, with the neurologist summary of findings attached. I’d appreciate any of your thoughts you may have in relation to this being an early ALS EMG pattern. I guess, to be blunt, what I’m looking for, is there any chance this EMG could reflect early or slowly progressive als? My EMGs, over 12 months seem to be getting more fruitful in that the first two were completely clean, third showed one muscle with chronic denervation and now the fourth shows multiple muscles with chronic denervation and one with active denervation. They seem to be moving in a negative direction over time.

It should be noted that my right Tibialis Anterior muscle continues to atrophy and I’d say it’s now about 75% smaller than my left TA, and this was agreed upon by my pcp as well. The muscles in the inner sole of my right foot seemto be atrophying now as well. I am terrified as I know foot drop can be one of the first signs in lower limb onset ALS and although other muscles higher up on my L5 chain show some chronic denervation, nothing active is showing in those muscles right now, as it’s like the muscle death has skipped to the near bottom of the L5 chain, which makes no sense of L5 nerve root impingement. Furthermore, I’m not experiencing any pain in my back or leg, at all, which is characteristic of sciatica and is extremely painful from what I understand. However, from reading the sticky, ALD tends to be pain free in the beginning and muscles just die without pain. Twitching, muscle atrophy/denervation, no pain= me being terrified.

I do have an MR Neurogram at UCSF this Tuesday, since my previous lumbar mri didn’t show any nerve root impingement in the L5 area. Their neuroradiologist is going to give it a good review, but I’m anxious as heck right know about all of this.

 

[KarenNWendyn]

The readout says right sided L5 radiculopathy. If you had ALS, there would be abnormalities in left sided muscles, upper extremity muscles, and paraspinal muscles.

 

[affected]

Thanks for posting actual results - that's a great result to get. L5 radiculopathy is not ALS. Your doctors will work with you on this but ALS doesn't start this way. All the very best

 

[Bestfriends14]

Your results clearly say an L5 issue and you've been told this more than once. Do you think if you had ALS your neurologist would not tell you for months? Like it's some secret?

When are you going to let your fascination with getting this disease go? It seems you're bound and determined to be diagnosed with this disease, but you are not going to be. Sorry to tell you. Probably best to move on at this point.

Good luck in life.

 

[Fasciculation1]

Thank you Tillie, Karen, and Best for feedback on my last EMG (my fourth). I recently completed the MR Neurogram with and without contrast of my lumbar spine and pelvis. The findings: “Course, caliber, signal intensity or enhancement of the lumbar plexus and sciatic nerves are normal. There is no evidence for denervation or atrophy.” So, the Neurogram suggests no evidence for my denervation/positive sharp waves of my TA muscle on my last EMG. My PCP said a referral to a neurosurgeon is not indicted based upon Neurogram findings and would be a waste of time. My neurologist did however agree to a neurosurgeon referral, after my pcp denied such. I see the surgeon on 11/5 at UCSF, which the neurologist thinks is a good move. I then see my neuromuscular neurologist on 11/6 to piece everything together. My pcp did say during his exam last week that my deep tendon reflexes are completely absent. I welcome any feedback, thoughts or recommendations, if anyone has them, as I’m very desperate for answers, direction, and a solution. I’ve taken all previously given feedback and acted on it. You all are really smart and I’ve found previous feedback useful. I appreciate the help from all here very much, but also don’t want to overextend my welcome either by asking for more help if I’m pushing that threshold with this post.

With this negative Neurogram, I’m more confident than ever that I do have ALS (lower motor neuron onset) or some variant of. My rationale: 14 months of twitching, both active (one muscle) and chronic (four muscles) denervation now shown on my L5 nerve path on my fourth EMG. Foot drop seems to be a common first feature in leg onset. Even though my first two EMGs were completely clean, I do have twitching and perceived atrophy in muscles that even my last EMG, two months ago, done by a neuromuscular doc, didn’t detect. My Tibialis muscle is 50-75% atrophied. I want more than anything for my intuition to be wrong, but I also know I’m not delusional and something is really wrong with me, even though no doctor has been able to diagnose it, yet. I’m a psychologist and really do not believe irrational, illogical health anxiety is at the root of my issue. I know that’s what everyone with health anxiety feels though. I have however gone back to my own personal therapy to gain some added support through all of this and to just be sure my anxiety, which I am experiencing to a certain degree, isn’t controlling me. Anyhow, I’ve been wrong before, and I’m hoping I am wrong again about having a motor neuron disease.

I’d really appreciate it if this thread could be left open. I promise to come back and update in the future, once I have answers or if even answers are never found and sufficient time has passed to fully rule out ALS. These health issues have all consumed me for over a year. I think it will be helpful for other members who have extreme health anxiety to know that even a clinical psychologist can be tricked by it, if that turns out to be the case here, or, if god forbid, my next EMG (my 5th), scheduled to be done in four more months, finally shows more widespread neurogenic abnormalities, indicative of ALS (praying more than even it doesn’t), that the gold standard EMG can indeed be done too early for ALS to be detected in some very small percentage of people. That seems to be a VERY common question on this forum (can an EMG be done too early?) and I feel my case could be a good example to answer it once and for all, for all us anxious beings, given the fact I’ll soon have had my fifth EMG done. I really appreciate and pray for all on this forum.

 

[lgelb]

The following is as an FYI to others. You made some statements that are misleading and I do not want to leave them unchallenged.

It is not an EMG's job to "explain" perceived atrophy and twitching. It is the EMG's job to detect nerve damage.

It is not MR neurography's job to "explain" 4 EMGs that are negative for disseminated disease, as if somehow negative tests must be explained by other tests.

From your 4 EMGs, heading toward #5 for no rational reason that any of us can discern, we have evidence of only local nerve damage at the L5 level, in no way suggestive of a generalized nerve disorder of any kind, least of all ALS.

Foot drop is a common feature of many disorders much more common than ALS, if indeed you have it.

"Can an EMG be done too early?" has indeed been asked (and answered, for those who read these forums with an open mind), many times. It is not an arcane mystery and you do no one a service to imply otherwise. You state that you "know" that you are not delusional. I suggest that you revisit that assumption, which is not supported by fact.

Stating that you are "confident" you have ALS, a disease that thousands of people would give anything not to have, betrays not only your own pathology, but a complete lack of empathy, certainly at odds with the professional standards of your stated profession.

Since you report you have returned to therapy, please show your therapist your previous post.

This thread is closed. Please do not open another.

Best,
Laurie