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taliaric

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My difficulties started with swallowing difficulties for which I went to the ER and was hospitalized in Neurology for a few days. They tested me for everything imaginable, MRI, EMG, single fiber EMG, barium swallow test, complete neuro exam etc. They originally thought that I had MG, but ruled that out. What they found was that I had "bulbar weakness" particularly in the neck and they were able to rule out a number of other neuro conditions. They discharged me and sent me for an evaluation a number of weeks later with an ENG to do a scope where they diagnosed me with tongue weakness, tongue twitching and tremor, vocal cord atrophy, and pharyngeal dysphagia. The EMG in the hospital showed L5/S1 radiculopathy and something minor with one of the muscles in my hip, but nothing else. The speech pathologist said my speech is nasal, but it is otherwise not impacted. My next neuro appointment is July 31st.

My questions are can bulbar onset ALS appear with a normal EMG? (They only did an EMG of my limbs and hip.)

What might I expect next in regard to testing and evaluation?

Many thanks for listening to my story and questions.

Jennifer
 
>What might I expect next in regard to testing and evaluation?

I would suggest finding an ALS clinic, perhaps at OSU (even tho they don't have a football team :) Go Blue! :)


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Max - Friday, July 18, 2014 2:28:11 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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If they did not EMG your bulbar area then the EMG could not rule out bulbar ALS. They did not put a needle under your chin? That is the way they usually check your tongue. I hope you already have followup as Max suggests is this is the direction they are looking in. You need experts for sure
Good luck
 
Thanks for your reply. OSU has doctors that treat ALS, but not an ALS clinic. There is a multidisciplinary ALS clinic in the city that is associated with the ALS association. I have been debating which would be the better choice. The ALS clinic would cost a little more because it is consider out-of-network on my insurance, but if it would be worth it, I would pay the difference. What are your thoughts on a multidisciplinary clinic vs. a med-center with ALS doctors?
 
>There is a multidisciplinary ALS clinic in the city that is associated with the ALS association. I have been debating which would be the better choice. The ALS clinic would cost a little more because it is consider out-of-network on my insurance, but if it would be worth it, I would pay the difference. What are your thoughts on a multidisciplinary clinic vs. a med-center with ALS doctors

that's the ticket!
 
I would also suggest getting straight to a multidisciplinary ALS clinic, it will be worth every penny to have this checked fully by those who know what they are doing most.

Truly all the best with getting this sorted one way or the other.
 
Your EMG wasn't normal. It showed radiculopathy and a problem with a hip muscle. I would get a copy of the EMG report to see exactly what was found so you can discuss it with your next dr. if necessary.

That said, an EMG doesn't show radiculopathy. It shows finding that can be interpreted as radiculopathy, with great specificity if the paraspinal muscles were tested. They didn't test your back, so they didn't test your paraspinal muscles. And if they based "radiculopathy" on chronic neurogenic changes alone, the conclusion of radiculopathy isn't as certain.

Do you have any symptoms of a lumbar radiculopathy, such as back our leg pain, numbness, weakness, or tingling? Did you have a lumbar MRI that showed radiculopathy?

The report should also state what they found in your hip muscle, unless they didn't needle your hip and, indeed, stuck your lower paraspinal muscles.

My guess is that if you go to an ALS neuro, the neuro will repeat the EMG and include the bulbar region this time.
 
EMG and lumbar radiculopathy:
 

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1) A multi-disciplinary clinic is best. You especially want to stay in the care of a pulmonologist.
2) If I thought I might have a terminal disease, money would be no object.
Best of luck to you.
 
Thank you for this information. I do have a S1 disc bulge with difficulty with heal walking (some have called it a foot drop) on the left side and weakness in my left hip. My neuro-back doctor does not feel that these are back related symptoms though based on my MRI, so I am a little confused by the EMG report and his interpretation of the MRI. The back doctor thinks it is neurological.
 
My tongue twitching and choking were my first symptoms, shortly after I had faculations over my whole body. I asked about the needle through the chin and the dr said that my tongue was twitching so fast that there was no need. I had EMG and MRI. I've made it over a year and still eating carefully. I had a LOT of blood tests to rule out other things and was diagnosed with bulbar ALS, hope you are different.
Janie
 
Jennifer, you ask, “…can bulbar onset ALS appear with a normal EMG?” But you stated that you did not have a normal EMG. “The EMG in the hospital showed L5/S1 radiculopathy and something minor with one of the muscles in my hip.”

First, understand that the EMG did not show an L5/S1 radiculopathy. The EMG probably showed denervation in muscles served by the L5?S1 nerves that the EMG doctor interpreted as a radic. That would then be confirmed by an MRI to show that the L5/S1 nerve was actually being pinched by something. You say you have an “S1 disc bulge with difficulty with heal walking (some have called it a foot drop) on the left side and weakness in my left hip...(but) ...My neuro-back doctor does not feel that these are back related symptoms though based on my MRI.” That sounds like your neuro-back doctor does not believe the bulge is severe enough to cause your weakness, which means the bulge is probably not longer relevant to your diagnosis. (Most adults have small bulges and narrowings in their spinal column, but so long as they don’t pinch the nerve they are irrelevant. An interesting finding, but a “red herring”.)

As to the EMG, one point of confusion that my neuro explained to me is that each EMG is interpreted on its own. That is, the EMG doc looks at what his EMG shows and makes an interpretation of that data and only that data. Your neuro then puts together all the data from the EMG(s), the clinical exam, the MRIs and everything else and makes his assessment. So, the EMG doc can be correct that his exam points in the direction of a radic, but the MRI can shows it is not a radic. Or, for example, the EMG doc can say his exam points to a radic, but when your neuro looks at all the EMGs, he sees widespread acute and chronic denervation which points toward an MND and when he considers the UMN signs he found on the clinical exam, his assessment may be ALS.

In your case, I don’t know enough about what the EMG showed and what muscles were tested. Has the weakness been assessed as clinical. Did the clinical exam show any signs of atrophy?

“What might I expect next in regard to testing and evaluation?” I would expect another EMG to include the paraspinals (including thoracic) and bulbar region. You didn’t mention blood tests and if your neuro finds things that lead him to think ALS there are lots of blood tests to look for other possible causes. Good luck and let us know how it goes.
 
Sorry I forgot to mention the blood tests. They did test my blood in the hospital for just about everything imaginable and everything as far as I know came back normal. The weakness was assessed as clinical in the foot and bulbar region according to the hospital diagnoses, but I don't see any diagnosis of atrophy. Thank you for your detailed explanation regarding radic.
 
Jennifer, what swallowing difficulties you mean? There are various - choking? Not being able to swallow? Aspiration?
 
My diagnosis is pharyngeal dysphagia which is visualized during a scope as premature spillage and food and liquids gathering on the weak side in the back of my throat during the exam. It is experienced as the sensation of choking, coughing, and swallowing the same swallow of food multiple times.
 
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