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Anxious One

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Was hoping someone could give me some insight on these symptoms and if they could be bulbar onset ALS:
1. MAJOR trouble swallowing my own saliva but do fine with food and drink
2. Tongue feels tired but I can move it any which way
3. No muscle weakness or fasiculations currently
4. Voice is hoarse, speech isn't impaired as of now in either slurring or volume
5. Mouth always feels dry no matter how much I drink
6. No muscle weakness or fasiculations at this time although I had them both a month ago
I've had a EMG and a nerve conduction test done last month but it was for my limbs as I didn't have these symptoms then. Also went to the Mayo in Rochester and saw a neuro who gave me a physical exam including my mouth but didn't do an EMG on my tongue again because I didn't have these symptoms when I was there. Any help/insight/wisdom would be very much appreciated.
 
I'm inferring your EMG was normal or you would have said otherwise. With the symptoms you describe, we would have expected an abnormal EMG. That your tongue was not tested is not an issue, esp. but not only since you report intermittent weakness/fascics.

So we pretty much take ALS off the table at this point absent any new clinical findings. I would look for other causes of your symptoms. From what you highlight, I would see an ENT or allergist, and consider a dry mouth spray and sugar-free cough drops. And a humidifier.

Best,
Laurie
 
Thank you so much for your response. My EMG was normal as at the time I had had occasional muscle twitches in my right deltoid and left calf. They checked all four limbs and said it was normal. When I went to Mayo the neuro had me do a few things with my tongue but didn't perform an EMG on me although he did ask after my physical exam if they had done my tongue and I said no. The thing is the swallowing issue is affecting my day to day and my sleep because something that is supposed to be voluntary I am having to think about. That being said most people I've read about with bulbar onset have issues swallowing liquid or food but I haven't seen anyone post about initial symptoms involving their own saliva. Just curious as I believe I either have bulbar onset ALS or this could be a huge case of anxiety on my end and my brain is forcing this issue. Any thoughts on that? Thanks again
 
One other issue I was having previously when I was tested and am still having weeks later although to a lesser extent is paresthesia in my arms when I sleep. It doesn't happen during the day but does occur every night and sometimes multiple times a night. Again not sure if that correlates to ALS but I had a nerve conduction test and that came back normal so it's not a peripheral neuropathy. Thanks and again any help or insight from anyone on this board would be appreciated more than you could imagine.
 
Could it be possible that you have become hypersensitive to your body's functions? I say this because there was a period in my life when I was experiencing extreme, sustained anxiety and my body went crazy with all kinds of symptoms. There are actually physical reasons for this because anxiety can create changes in hormones, lower pain tolerance and many other things. Extreme anxiety will also cause dry mouth and difficulty swallowing. It can also upset your stomach and cause acid reflux which leads to hoarseness.

If I were you I would go to my primary care doctor with your list of symptoms and see what she/he advises.
 
Thank you for the reply Kim and that's very possible in my case. To elaborate a bit more I am 42, had always been healthy until mid June when out of nowhere I lost my appetite. I lost 16 pounds in 17 days before things settled down. I had numerous tests for cancer etc then the EMG once my paresthesia and muscle twitches began in early July. I felt I was turning the corner after leaving the Mayo Clinic but then these new symptoms appeared and I've lost another 7 pounds just in the last three days bring me down 29 pounds total. My appetite which I had lost and then regained is gone and I assume that part is anxiety. I see my PCP on Monday and I am sure he will think I am crazy for asking for another EMG, this time to check for bulbar onset but I don't know what else to do. I guess it's a hard line to walk between being proactive/aware and being obsessive/hypersensitive. Is there a checklist of symptoms you must have to suspect bulbar onset or is that just a ridiculous question?
 
I hate to keep bothering and if my posting is bothersome I will make this my last. I did notice today after a fitful night of sleep my tongue is now covered in a white film that I cannot brush away. My tongue remains tired but isn't having any fasiculations as of yet. I am able to talk without slurring and I have complete movement of my tongue. I guess what I am looking to have answered is whether or not it's reasonable to request a bulbar onset EMG with the following symptoms:
1. Difficulty swallowing--I am fine with food and drink, it's my own saliva that I have trouble getting down which is technically a thin liquid but I haven't read of anyone else with this symptom in my research
2. Tongue is tired, feels heavy and has a white coating that won't go away
3. Trouble sleeping due to swallowing issues and paresthesia in both of my arms. Again paresthesia is not a symptom I've seen on here but curious if it's rare or a complete non issue related to ALS
I had an EMG on my four limbs on July 10th which came back clean but that doesn't have any impact on the bulbar onset correct? I assume they would have to check your chin and tongue I believe to see if there is an issue there. Again any more help and guidance would be profoundly appreciated and I am incredibly grateful to the two of you who responded earlier. It's a tremendous help to all of us who are trying to figure out the proper path to diagnosis/relief whatever the root cause of our issues may be.
 
(" I guess what I am looking to have answered is whether or not it's reasonable to request a bulbar onset EMG with the following symptoms.")

Yes. Have the EMG where they stick needles in your tongue and jaw muscles.

Don't post again until you convince your Neurologist you need that EMG to relieve your anxiety.

Good luck until then... (after the EMG.)
 
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It's hard to get sarcasm on social media but I assume your response is meant to be taken that way. If so though I don't understand, as your response is the premise of my question. I know it must be terrible to get a bulbar onset EMG, the limb one was bad enough for me never to want to do another. I do however have symptoms that are concerning enough to me to consider asking my PCP to schedule me to have one. I was hoping through this forum that I could get some insight that would allow me to make an informed decision. I am well aware this could be anxiety related as I have been under a ton of stresss these last 7 weeks as my health has fluctuated. I am truly sorry if I offended you in any way, I know what I've been through pales a thousand fold to what any poster here has endured. I would love a sincere answer though if you have the time.
 
I would be very honest with my primary care provider and tell him how worried you are. If another EMG is the only way to convince yourself you don't have ALS, then request one. Please make yourself eat a balanced diet because you can throw off your body's chemistry by not consuming enough nutrients.

From my experience, my guess is that it is anxiety but you are the one who needs to be convinced. Don't let the anxiety alter your brain chemistry and throw you into a depression. Go back to your primary care with your list and your concerns.

Until you do that I hope you will not post again. Reading this forum will only make you have more symptoms and more fears.

I'm very sorry you are so scared but there is nothing more I can offer you besides what I've already said.
 
Sincerely... after all you have detailed here, to great length, tell your PCP you need to have that EMG scheduled ASAP to relieve your severe anxiety.

If he/she will schedule it... post back afterwards.

Posting more symptoms you may have forgot, any new symptoms or telling us old one have gotten worse... will accomplish nothing more.

Again, sincerely.... get the EMG then check back. Enough for now.
 
It is true that if someone had only bulbar involvement a limb emg would not see it. Many with bulbar onset, though, have abnormal limb emgs even without any noticeable symptoms. It is not necessary to emg the tongue to check for bulbar As well as tongue and under the chin that you mentioned, sternocleidomastoid is an acceptable often preferred alternative.

Do you need any of this clinically? It does not seem like from your description but it would be a decision that should be made by your doctor after discussing with you. Consider honestly whether you would benefit. If you had one and they said normal could you move on?
 
I just wanted to sincerely thank all of you for your responses, I will take the advice I have received on here and will see what my PCP says on Monday. I will post back afterwords with an update.
 
Ok well I said I would wait to post after my appointment with my PCP. He told me I did not have or exhibit any signs of ALS, Bulbar or otherwise. That being said he couldn't explain my wide swath of symptoms that seem to cross over from gastrointestinal to neurological in nature. I am heading back to the Mayo Clinic where the neurologist who did my strength test last month and cleared me has ordered an EKG for me along with some autonomic neuropathy exams. I will also see a GI and endocrinologist so maybe some relief or answers by the end of next week. Of course I am terrified both physically and mentally of the pain and possibilities ahead but I keep hope that I've had one clear EMG, passed the neurological exam at the Mayo a few weeks ago and my PCP doesn't think I need to have another EMG. However the doctor at Mayo ordered it so I guess I need it. One question for the members on this board who have been so gracious with their patience and counsel, is excessive saliva on one side of your mouth congruent with bulbar onset? That's been a new thing for me here recently but again it's just on one side of my mouth.
 
Just one little input about the "pain of an EMG" issue.

If I sincerely worried I might have a fatal disease, I would happily go deeply in debt to fly a thousand miles to take the most painful tests ASAP, and be glad about it.

So it is possible that your mind is balancing "Do I want to avoid the pain?" versus "Might I really have ALS?" and you subconsciously know in your heart that there is no need for testing, no ALS going on.
 
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