Status
Not open for further replies.

12tribes

Active member
Joined
Nov 19, 2015
Messages
45
Reason
Other
Country
US
State
TN
City
Nashville
I don't even know what a single fiber EMG is, but away. I've been having some difficulty swallowing, speaking, and breathing. I went to a neurologist at Vanderbilt University on Monday. She preformed some basic strength and reflex test, all which came back normal, before starting the EMG testing. She only did my Neck region (Extremely painful), because she said that where my symptoms are. The test lasted about an hour, then I was told to wait in the waiting room. After about 20 minutes, she called me back, and told me it was clean, and that I didn't have Myasthenia Gravis. MG? I was there thinking ALS, and she wasn't apparently. She apologized for not being able to diagnose me, and I went on my way. Anyway, I have a few question about this.

1. Does a Clean EMG for MG, also mean a clean EMG for ALS, or is that looking at different things on the EMG?

2. Does being tested in the neck cover Bulbar ALS onset, or do I need to get other areas in that region tested (e.g., Tongue, under the chin..etc)

In addition too the above mentioned problems, I am also experiencing joint pain everywhere, and, of course, twitching. Is this something to take into account?

Thanks for your time.
 
1) Yes, if the examiner knows her stuff.
2) Ditto.
3) What makes me doubt 1) and 2) is that she's not supposed to send you away without a plan for diagnosing you or sending you to someone who can.

Call her and ask what the plan for 3) is. Also see the sticky here about "Getting a Diagnosis."
 
So you doubt that my EMG was clean because she didn't refer me, or attempt more testing? I did think it was weird she did that. There was two doctors in looking at the EMG, so I hope they both aren't idiots. I'm just lost right now..
 
No, I didn't say I doubt the EMG was clean. I just meant she didn't leave you with another differential/ plan of action, which would be usual, so I'm not going to assume she knows all.

Once you've wrung all she knows out of her (the purpose of calling), you can decide if/where to seek a second opinion, and you'll want to bring her report/tracings for whatever they're worth.
 
I failed to mention that Vanderbilt Clinic was a referral from a neuro I was already seeing. She reefed me to Vanderbilt for more testing. My regular neuro Preformed an EMG on me some months ago, and said it was clean. She only did the lims at that time. So I do feel better knowing I got my lims and bulbar region done. She only referred me because she thought it would make me feel better to get a more advanced test done. But this still leaves me at an odd place. I have no idea where to go from here. I don't know what other test I should take, or if I even need the help of a neuro anymore. You have been more than helpful to me. I just don't know what to do. Is ALS still on the table after Two EMG's?
 
No, you're clear of ALS.

Your GP doctor is trained and experienced in leading health investigations to whichever specialty might be needed next. Go see her.
 
You may be hearing from neuro one depending on how the referral was worded. Sometimes a patient is transferred for care with the expectation that the second person will take over and arrange follow up. But sometimes you are sent for one visit or test with the expectation that after the test or exam the patient and results will be handled by the person who sent you. I would have expected the Vanderbilt neuro to say I am sending the report to Dr X who will decide what is next if that were so
 
Good point.

The neuro who did the single-fiber EMG didn't have the responsibility for following your case and diagnosing you, she was simply consulted to rule out MG. She did her job.
 
Excellent point. I wish I would have been a little more prepared. I should have had these questions ready to be answered. I will contact my primary neuro, to see what is next steps. Thank you all for your advice.
 
I'm sorry to bother you all again. Just one more question, and I'll be on my way. As I stated above, I'm having some difficulty breathing. I've been having some twitching in the diaphragm area of my chest (On and off, not consistent). I read on the stickies that muscle weakness is accomapnied by twitching in ALS. Considering the fact the my breathing issue's could be related to a weakened diaphragm, she I be more concerned about the twitching in that area? Last night it was violent twitching, that woke me up. Does this sound like ALS? Bulbar onset? I was hoping the EMG's cleared me, but I haven't been tested in that region, nor have I had any type of lunge capacity breathing testing done.

Thank you.
 
ALS destroys the motor neurons in the voluntary nervous system which control your voluntary muscles like arms and legs.

Breathing is an automatic thing, and those muscles are connected to the autonomous nervous system, which are not affected by ALS.

Bulbar onset ALS paralyzes muscles in the tongue.

Take further questions to your primary GP doctor.
 
Atsugi, you are extremely helpful! If what you say is true, why do people with ALS have difficulty breathing? Doesn't this have something to do with the diaphragm muscles being paralyzed? Please forgive my ignorance. I knew nothing about ALS until the Ice bucket challenge last year.
 
Don't really know what you call "difficulty breathing." There are many kinds of difficulties in breathing with different causes.

But I'm not inclined to continue answering your posts. We have limited time and so we spend it helping people who are dealing with ALS. You're not.

Good luck to you.
 
While I agree w/ Mike that you need to be elsewhere, Tribes, for the benefit of other readers, breathing is controlled by the autonomic nervous system, so you don't have to consciously keep breathing.

But for the autonomic system to get you enough air, the muscles that have to do the work of breathing, including those in your neck, chest and diaphragm, have to be functional, and that can only happen when the nerves that control them are healthy. So that is why breathing is compromised in ALS.

If you had ALS, coupled with the symptoms you mention, there would have some signs on the two EMGs you have had done. So you, your primary neuro and perhaps an internist, all need to look in another direction. If no other disease process is evident, it may prove productive to treat health anxiety, a disabling condition in itself, rather than live your life in limbo.

All the best.
 
Just wanted to provide an update of my doctors visit. I told my GP about my breathing problems. She hooked a device to my finger tip, and said my O2 levels was 98% (Normal is between 92-96). Then she listened to my breathing. She noted some whizzing on the left side of my lungs. She said she normally won't be troubled by it, but she knows how I can be. So I took an xray to check. Here is my question. If I were having trouble breathing due to ALS, would my O2 levels be normal? Also, what about the whizzing. Does that point toward ALS, or away?
 
Status
Not open for further replies.
Back
Top