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Jem1112

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I had an EMG test done in 2016 when I developed foot drop and was tripping and occasionally falling. The neurologist didn’t have any concern at that time. He said I had some arthritis. I saw a neurosurgeon and decided to do surgery for foot drop on my L5 section, discectomy she called it. Surgery did not help my foot drop.

In the meantime two years later I still have footdrop and have developed a weakness in my left thumb and index finger. Neurologists ordered MRIs of neck and spine. Saw arthritis and a bulging disc. NOW he has “strong concern” that I may have ALS and wants an EMG odne of my arms which I agreed to. He also mentioned it could be MMN.

First of all, I’m scared I’m dying. Secondly I really haven’t gotten any worse since 2016 but I do use a cane when walking and I use a walker in the house because I feel stronger with it and safer. My speech is fine. I do have pain in my forearm when I lift with my left arm, thinking carpal tunnel but neuro said no.... so now I don’t have the arm EMG until June 16th and consult on June 22nd.

All I hear in my head is strong concern for ALS. Why do doctors say things when they’re not 100% positive???? Anyone else go through something similar????? Thanks!
 
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lgelb

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MMN is treatable and progresses more slowly than ALS, so it is both more likely from what you have said, and more favorable a diagnosis. Most ALS does not progress in the way you have described. Without knowing your age, I'll mention that there are also adult-onset muscular dystrophies and other motor syndromes.

I am sorry that the doc raised your fears, but you will know more soon and the odds against ALS are still well in your favor, especially for typical forms.

Best,
Laurie
 

KimT

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I think there are many conditions that are possible and getting an EMG could reveal some of them. Is your current doctor a specialist in motor neuron diseases, a regular neuro, or something else?

Without an NCS & EMG I wouldn't expect a doctor to make a guess, especially since you have other documented issues.

Please let us know what the test reveals.
 

Jem1112

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I’m 61 and was 58 when I developed the foot drop
 

KarenNWendyn

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You have at least 3 possibilities on the table: cervical spine stenosis with myelopathy, motor neuron neuropathy, and ALS. There may be others as well, as Laurie has suggested. And ALS would be the least likely.

The normal EMG in 2016 is reassuring against ALS, but since there seem to be some new symptoms in upper extremities, the doctor feels enough concern to get updated EMGs. The course of your symptom progression points away from ALS, so hopefully the EMGs will rule it out once and for all. Normal speech after 2 years of symptoms is also reassuring.

As to your concern why doctors say things when they are not 100% certain, all doctors are different. Some think out loud. Sometimes a doctor will bring up several possibilities, not all of them equally likely, and a patient will latch on to the one that is least probable, because it’s the one they most fear. From the doctor’s perspective, they want you to know what they are thinking and why they are ordering the tests the do. Many things in medicine are not 100% certain.

Your appointments are coming up soon, so you should get answers soon. I wish you the best.
 

Jem1112

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In 2016 I developed foot drop in oeft foot. EMG done showed as abnormal. Neurologist suggested motor neuronopathy. I haven’t had any speech difficulties or swIllowing difficulties nor breathing difficulties in the last two year. Having another EMG of arms tomorrow. NOw neurologist is concerned about ALS. Can u have ALS wi5out developing problems( speech, breathing) In two years??? Also, I have no problems walking with AFOs on both legs while using a walker.
 

Nikki J

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Well yes you can. Progression varies widely. I know someone who has had only one leg affected for 10 years. ( and her diagnosis has been confirmed with several neuromuscular opinions). It isn’t usual but there are outliers.

You got your EMG moved up to tomorrow ( Saturday)? Best of luck and let us know how it goes.
 

Jlynn

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Jen, My brother had gone to a neurologist at the beginning of his symptoms and he casually said to him "you may have ALS. Go home and do some reading". Well he went home and did some reading. Scared the heck out of him so much that he waited another year and a half before going to another neurologist (when he could no longer deny it) where it was confirmed. He did not have any problems with breathing or swallowing really until the last year. As mentioned everyone's progression is different so there is no predicting.
 

Clearwater AL

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Jlynn, as you wrote above...

"Jen, My brother had gone to a neurologist at the beginning of his symptoms and he casually said to him "you may have ALS. Go home and do some reading"

Unfortunately your brother saw the most incompetent, unethical, uneducated baffoon of a Neurologist in practice.

It would be like an Oncologist telling a patient, "I think you have cancer... go home and read about it.

Unbelievable!

Didn't mean to hijack the Thread... just had to point that out.
 
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Jem1112

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“Possible ALS” says my neurologist

Timeline
2016 PT for knee, realized couldn’t go up on toes or back on heels
Saw neurosurgeon who did MRI of lower back, started with footdrop in LF. Had pain in lower back. Ordered an AFO for left foot which helped me wAlk much better. Use a cane with afo and a walker when I don’t have AFO on for safety reasons.
Saw neurologist who did EMG and nerve conduction. He never scheduled another appointment but said call if I want “ something for the back pain”. I didn’t follow up with him.
Went back to neuroSURGEON who recommended a discectomy
which I did in Feb 2017. Said it might be too late to repair footdrop in left foot. Still have footdrop
Two months agoStarted noticing slight foot drop in right foot.
Went back to original neurologist and he did arm EMG. Have weakness in left thumb and forefinger. Still have pain in my back and MRIs oof spine and ne k showed arthritis and a herniated disc. Neurologist doesn’t think that is causing my hand weakness. I want to see. Neurosurgeon who deal wi5 surgery and reading MRIs. Neurologist is insisting it’s possible ALS. I’m insisting I go to the neurosurgeon aNd have bloodwork done. No breathing issues or speech issues.
What are your ideas on this scenario????
 

Nikki J

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Re: “Possible ALS” says my neurologist

Please clarify. Were you given the diagnosis of possible ALS by El Escorial criteria- exam and EMG consistent with ALS in one body area? If you were you should have been given the option of riluzole , discussed radicava and been referred to a neuromuscular clinic.

Or is this maybe ALS not sure according to the neuro? In which case we will merge this with your prior thread if you are not diagnosed.

Either way I suggest another opinion and one from a neuromuscular specialist. If you have not already gone there go to the UMass ALS clinic. If that is who saw you could go to NYC but I would recommend MGH

That does not mean you can’t also go to the neurosurgeon for an opinion

If you share the EMG report that might help us comment

I am sorry this must be very difficult
 
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Jem1112

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Re: “Possible ALS” says my neurologist

Not a certain diagnosis yet. Neurosurgeon wants me to do bloodwork . EMG showed weakness in left side. I’m not sure what the e criteria thing is u mentioned.
 

KarenNWendyn

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Re: “Possible ALS” says my neurologist

Agree with Nikki.

El Escorial criteria is generally what most neuromuscular disease specialists use to diagnose ALS. This involves seeing upper and lower motor neuron objective abnormalities in at least 3 of 4 spinal segments. Spinal segments include bulbar region (head, neck, speech, swallowing), cervical (arms, hands), thoracic (chest, breathing, abdominal muscles), and lumbar (feet and legs).

Characteristic EMG findings can substitute for lower motor neuron abnormalities on clinical exam — e.g. abnormal EMG in bulbar region counts as bulbar involvement in a person who shows clinical weakness in extremities but perhaps has normal speech and swallowing.

Normal EMG rules out ALS even if weakness is present.

Diagnosis also requires ruling out conditions which may mimic ALS , including spinal stenosis with myelopathy (cord compression).

My neuro also insisted on seeing evidence of clinical progression over time in order to confirm diagnosis.

Let us know how your diagnosis was confirmed. As Nikki said, it would also be helpful if you could include results of your EMG test.

Second opinion is always helpful, especially if there is any doubt.

If it turns out that you do have ALS, the good news is that you appear to have extremely slow progression.

I wish you the best.
 

lgelb

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Re: “Possible ALS” says my neurologist

Jem, if you can post a copy of the EMG report, which is yours to keep by right (along with all other test results and we recommend everyone have their own copy), we could be more helpful.
 
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