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Kimberly2790

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lehi
I post here awhile back about my husband under, force the doctor or wait and see.

Anyway, my husband has not been officially dignosed. The neurlogist we have been seeing has told us he can't say for sure it is, but can't say for sure it is not either. EMG came back dirty but he does have a pinched nerve in neck could be effecting results, but there is twitching in hand also which shouldn't be effected by this nerve. He is sending us to another neurlogist that has seen more people in with ALS.

So here is my question my husband sympton start with slurred speech that has steadly gotton worse. Also has twitching in right arm that is slowly progressing to his shoulder) We went to a throat specialist because he said that he felt like there was something stuck in his throat all the time, the doctor scoped his throat and didn't find anything that he said he could help us with but recommended that we see a neurlogist. Told us he did see some unusal thing and showed us that there is sylvia pooling at the back of his throat (that should not happen) and also that is vocal cords have a strange temor.

So finally to my question, recently he has moments were he cant catch his breath, then he almost like has a panic attack. Once he calms down he get so he can breath again. Have any of you seen this? If so, what would you suggest? What about Anti-anxiety medication, is that something we should talk to the doctor about? Is this just be a Panic attack or is it another sympton?
 
I'm also undiagnosed as of now but I wanted to say I have similar experiences that every day seem to get a touch worse. I also had an ent eval including a fees and scope study. Nothing was found but my swallowing is just not good and I get fasiculations in my tongue neck lips chin. They are unnerving especially when coupled with poor speech and problems swallowing.

Because I feel like my voice could give out any moment or that I might choke, I think this is making me panic. In other words, feeling like I can't control my swallowing is causing panic and exacerbating my symptoms. I'm not sure if your husband is the same. I'm modifying my diet and avoiding foods that seem to get trapped which makes me feel worse. Yogurts my new best friend, as is whole milk in my coffee instead of skim.
 
Hi Kimberly, when does your husband go for a second opinion? It is kinda hard to know what it is that your husband is experiencing as he has not had a diagnosed of mnd/als yet. At this point, in my opinion, it would be a guessing game from a whole bunch of pple. For what it is worth, if I were in your shoes, I would want to know if the shortness of breath could be caused by something other than a panic attack before taking anti-anxiety pills. Keep track of these episodes (frequency, time and duration). Your probably swearing at my post right now as I have not really offered any good leads...I hope you do see the neurologist very soon and find answers.
 
but he does have a pinched nerve in neck could be effecting results,

Kim, doubt you'll get a diagnoses until after this problem is fixed. Unfortunately there is no test for ALS, must fix or eliminate everything else. This normally takes a bunch of time:-(

But I believe he can take medication to help that saliva problem. Luck to you.
 
Unfortunately, anxiety doesn't make you immune to motor neuron diseases, and motor neuron diseases don't make you immune to anxiety. This holds true for most any two conditions you want to throw in the sentence.

In the folks with benign neurological symptoms (BFS and the like) I have talked to, many are prone to attacks of anxiety and hyperventilation related to undiagnosed mouth/throat symptoms. It seems reasonable to think that would be a strong possibility whether someone's symptoms were benign or not, to have that kind of worry manifest with physical issues. Where certainty is lacking, your mind is happy to try and connect the dots for you. Also, from what I've read, early respiratory symptoms in PALS are a lot sneakier than that. So it seems more likely to be caused by something like anxiety than something like ALS.

That said, with evidence of functional issues in in mouth and throat, it is definetely worth it to go to a neurologist if the ENT suggests it. It would also be worth talking about the possible anxiety issues with your GP and then possibly even a psychologist/psychiatrist. There's no reason to pick just one path here. Address the whole man, as it were.
 
I take small doses of Xanax for the terror that comes with this disease. Mostly when I sleep to prevent nightmares. Glad you are seeing a neurologist familiar with ALS. EMG's and their accuracy are very dependent on the person administering the test.
Good luck!
Hollister
 
Thank you for you reply. His appointment is July 18.
 
How does his tongue look?
 
My PALS has had anxiety attacks around not being able to breathe properly as he does sometimes aspirate a little saliva. He is learning how to breathe and calm himself and it helps enormously.

I would panic too, how could it not make a person anxious?
 
I used to get choked on saliva dripping down my throat and freak out. I have found that when I occasionally get choked, if I hold my nose open and breathe through my nose only and try to calm down it really helps a lot. Breathing through the nose helps me a lot. Now if I get choked I immediately hold my nose open wide and breathe slow deep breaths.
I also used to have panic attacks when going out in public after I started having balance problems (worrying about falling). I did take 1mg of Valium which helped a lot. I rarely take it anymore as the panic attacks happen much less frequently now.
 
I've read on other threads here that some people take Ativan to control Panic Attacks.


Carlos
 
Has anyone had him do a swallow test?
 
I used to get a spasm where my throat would close up, and I could not breathe.It's called a laryngospasm, and it used to be much discussed around here as a normal part of bulbar ALS. Reassure him that in the very worst case, if he passes out, all his muscles will relax and he will breathe again. So it's not life threatening. Some people have relief by bending the head forward or back, to straighten the airway. And I think there was some oral medication to relax the throat muscles.

I understand that he is not diagnosed, but if he is having bulbar issues from whatever cause, I suppose this could be part of it. Search for laryngospasm for more information.
 
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