Old 03-12-2019, 05:02 PM #1 (permalink)
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Originally Posted by KarenNWendyn View Post
You had the clean EMG not too long ago, and this clears you of ALS. So clearly something else is going on. Keep working with your doctors. People here wonít tell you anything different except to reassure you itís not ALS.
Hi KarenNWendyn,

Sorry to hijack this question here. I've read a few FAQs on the forum today as I scour the web to help my wife.

Would you mind expanding on the clean EMG = no ALS statement and perhaps point me towards some supporting information for that? My wife has seen a neurologist and "passed" the EMG (as well as clean MRI, barium swallow, etc.).

Basically, 2 speech pathologists suggested ALS due to her tongue weakness while a neurologist who performed the EMG (as well as clean MRI, barium swallow, etc.). didn't concur.

Just saw a speech MD and an Otolaryngology today and they're referring her to another Neurologist. They did ask about the EMG but had concerns over the tongue weakness and feared the worst....

Much apologies again for the hi-jack. This has been an insane 5 months and we're desperate....

Thank you for any and all info and assistance. Hope the OP finds comfort as well (sorry OP)
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Old 03-12-2019, 05:09 PM #2 (permalink)
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Hi Blues, I have moved your comment to its own thread. This will allow for your question to be answered and to not divert from the other thread.
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Old 03-12-2019, 05:42 PM #3 (permalink)
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Default Re: Blues88's question- moved post

Hi Blue,

May I ask what the road has been that brought your wife to see a neurologist? Symptoms, time line etc.? I ask because it is not just the clean EMG that rules out ALS but also a clean clinical exam and other symtoms that may not fit with ALS that would rule the disease out.
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Old 03-12-2019, 05:50 PM #4 (permalink)
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Default Re: Blues88's question- moved post

An EMG will pick up chronic/ active denervation with signs of renervation. This will show up on EMG long before there is clinical weakness. The disease process is you begin to lose motor units( individual nerves going to the muscle), as this is going on your body uses nearby nerves to replace the lost motor units. The loss of nerves starts to outstrip the renervation, and once you have lost about 70% of the nerves you begin to lose the effected muscle. It isn't weak, the muscle is paralysed, will not contract. You don't feel weak, the muscle just is not there. That in a nutshell is why a clean EMG means you don't have ALS.
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Old 03-12-2019, 06:19 PM #5 (permalink)
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Default Re: Blues88's question- moved post

My colleagues here have said it well.

Iíll add that there are a whole host of conditions, some neurological and some not, that can cause symptoms that mimic ALS but are distinguished by not causing the same EMG findings as ALS.

If you have ongoing concerns, you can always request a referral to an ALS specialist. They will likely do their own EMG.
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Old 03-12-2019, 06:19 PM #6 (permalink)
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Default Re: Blues88's question- moved post

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Originally Posted by Bestfriendstilltheend View Post
Hi Blue,

May I ask what the road has been that brought your wife to see a neurologist? Symptoms, time line etc.? I ask because it is not just the clean EMG that rules out ALS but also a clean clinical exam and other symtoms that may not fit with ALS that would rule the disease out.
Thanks a lot for asking....it's been a pretty strange trip. I'll have to ask her for more specifics (or just give her my log in) but basically:

She had a lot of thumb and forearm pain starting starting two months after our daughter was born (starting late September 2018...Daughter was born mid July 201. Both her PCP and DC (chiro) diagnosed dequervain's tendonitis and told her it was relatively common with new moms due to the strain and lifting associated with nursing. She nursed for roughly 6 months. She's prescribed prednizone in October...then comes the lisp...more on that later.

She was off of birth control during and post partum, which exacerbated some hormonal issues. She felt pretty rough mentally for a bit...the sleep loss'll do that! I'm probably screwing timelines up from here, but she inquired about sleeplessness (historically neanderthalic-type sleeper) at a follow up OB appt. and her OB suggested she might have a touch of postpartum anxiety. She went back to her PCP who prescribed lexapro. Wife didn't at all like the way it made her feel, and stopped after a few weeks.

We noticed she was getting a lisp (had one as a kid and corrected through speech therapy) post lexapro and she was still having the same "hand area" pain, so she went back to see the PCP. Told again that anxiety manifested itself in weird ways. This was late October 2018.

She goes to her DC and gets some work done around this time too. Sorry again for not being precise here, but shortly thereafter, her speech really deteriorates....she sounds like she's deaf (no offense!) Hypernasal pitch, labored, MUCH slower pace, and a definite lisp. She calls her DC. He freaks out; tells her he wants to help but that he won't work on anything but her forearms...makes sense.

So the journey begins. She bounces around...gets told this is anxiety, gets routinely pushed into the "postpartum" bracket and then starts getting pissed. Does a bunch of research, consults a few speech therapists, and thinks it might be dysarthric ataxia. Speech therapists are sort of divided as to what it could be....would anxiety do this? Would the throat/neck/jaw be an issue? TMJ? Myasthenia Gravis? MS? ALS?

ALS pops up, and we sh&t ourselves (obviously). She goes to a neurologist and gets an MRI test in November and its clear. She gets an EMG on December 10th and its clear. She does a swallow test and its pretty much clear, though she reports chewing is a bit tougher and she's choked about 4 times....on water.

And around and around we go. Speech pathologists/Otolaryngologists fear it might be ALS or another neuromuscular disease; the neurologist who performed the EMG and MRI says no. She tried to get a second opinion twice and the two other neurologists concurred with the acting after reviewing their notes.

Sorry for the novel here. I'm quite sure I'm missing things. My wife is incredibly tough and organized, so she's taken COPIOUS notes. Just wanted to know how, uh, reassuring it truly is to get a clean EMG.

She's been pushing for a neck MRI, since while some symptoms, taken together, could definitely point to an ALS diagnosis, but the other physical issues she's been having could indicate something else....something rare/weird perhaps. We want to be clear-eyed either way, but obviously, it'll be weeks till she can get into this other neuro and throwing out a potential ALS diagnosis is BRAIN ROTTING!

Thanks for listening...I'll respond back with anything you might need or want to know. Really and truly appreciate it!

Last edited by Blues88 : 03-12-2019 at 06:32 PM Reason: Dates and wow you can tell I'm writing from work...sorry!
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Old 03-13-2019, 07:52 AM #7 (permalink)
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Default Re: Blues88's question- moved post

Has she been to Wash U? They have a very strong neuromuscular department. If her second opinion attempts included there and were neuromuscular another approach might be to see a general neurologist there. If they had a concern they could facilitate a referral
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Old 03-13-2019, 12:06 PM #8 (permalink)
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Default Re: Blues88's question- moved post

I do not have a whole lot of experience with bulbar onset, but a friend from an ALS group has had bulbar issues the past few months. He sounds like he is drunk and heavily slurs his words.

The pain your wife is experiencing points away from ALS and the speech issues may be drug related as they coincideded with the usage of medication. However, as this has not gotten better with her discontinuing Lexapro, it would be advisable to get a second opinion with a neuromuscular specialist. If the EMG comes back clean again, then you guys can start the steps to explore what else it may be. Again, it is not just the EMG that needs to be clean to rule out ALS but also a clean clinical exam and symptoms that point away from ALS such as numbness and tingling, for example. If all of these have been clean, ALS is not n the table for your wide.

Good luck and please keep us posted if you can get another opinion from a neuromuscular specialist.
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Old 03-13-2019, 02:04 PM #9 (permalink)
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Default Re: Blues88's question- moved post

Hi,

This is Blue's wife. Thank you all so much for your time and thought.

I am wondering what is meant by "clinical exam" in this context. Is there any way to give more examples than the tingling/numbness one, or a link that I can be sent to in order to review?

My original neurologist did show me how I don't have certain things a person with ALS might have, including lack of resting fasciculation in my tongue.

I have tingling in my right hand, which is the one they all say is curiously weak (despite my recent recovery from de quervains and lack of shoulder/neck work by my DC).

I have been told my speech sounds "drunk" or "drugged" by many.

The speech continues to be the main hang-up for everyone.

My next neurologist appointment is with Wash U on April 8th, with a neuromuscular specialist. I guess it sounds like his exam is the BIG ONE.
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Old 03-13-2019, 02:40 PM #10 (permalink)
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Default Re: Blues88's question- moved post

Great you are going to Wash U. Who are you seeing?

Thank you for identifying clearly who is speaking. Please continue to do so. We ask people who are staying to have separate accounts but we hope you won’t need that!

Clinical exam is the doctor’s findings. No fasciculations at rest with tongue is an example. Reflexes, spasticity or tone, atrophy and weakness found by the doctor are others. What you feel is a symptom not a clinical finding so tingling is not a clinical exam finding. If you have abnormal findings on the sensory exam done by the doctor that would be a clinical finding.

Hope this helps clarify

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Old 03-13-2019, 03:30 PM #11 (permalink)
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Thank you so much for the clarification about the clinical findings. I am seeing Dr. Bucelli at Wash U. I appreciate the support. One of us will be sure to update with the findings (clinical etc.) from that appointment.
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Old 03-13-2019, 03:33 PM #12 (permalink)
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Default Re: Blues88's question- moved post

I'm not a doctor, but I do have bulbar onset. Lack of tongue fasiculations when you have that level of clinical weakness, coupled with clean EMG of the tongue, does seem to point away from ALS. If there was a lack of other clinical findings (the things Nikki mentioned like reflexes and tone) that would make me think pretty strongly against ALS. That said, tongue weakness, atrophy, and speech and swallowing deterioration are concerning for ALS in general and I can see why you'll want to get a definitive opinion with a really experienced neuromuscular or ALS specialist. I would want a new EMG of the tongue performed by a neuromuscular specialist if previous EMGs were performed by general neuro or neurophysiologist.
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Old 03-13-2019, 03:37 PM #13 (permalink)
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You should be in good hands with Dr Bucelli. Please do let us know

Best of luck
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Old 03-13-2019, 05:52 PM #14 (permalink)
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Default Re: Blues88's question- moved post

You really need to understand, there is not a single person with ALS here who has a CLEAN EMG. An EMG will pick up more than just Denervation/reinervation. It would pick up things like MS, peripheral neuropathy, carpal tunnel, past injuries, the list goes on. How you wound up here with a CLEAN EMG is a real head scratcher. So relax, go to the neuromuscular doctor if you think it will make you feel better. If i had a clean emg I'd be doing cartwheels.

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