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Crios78

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Learn about ALS
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Charlotte
Hello everyone,

I know from my title I picked the rarest of the rare to worry over, and I’m sorry ahead of time if come off as someone with just health anxiety. I don’t mean to waste no ones time here especially those who are suffering from this terrible disease. My prayers go out to all of you and I appreciate what ever help you can give in this matter. Oh I know that no one here is a doctor and I’m not looking for anyone to diagnose me.

Ok my terrible journey started about 7 months ago. I’m a 40 y/o disabled veteran who suffers from PTSD and Anxiety, and I know all of my worries could just be part my disability, but I still can’t put this behind me. 7 months ago I started to develop a constant twitch in my right arm, which eventually traveled to the rest of my body. Which led me to the one of the biggest mistakes I’ve ever made, and that is the dreaded GOOGLE search. I then turned to my doctor And then was blessed enough to get a appointment to a ALS clinic soon after. Where a thorough Nero and EMG exam was done immediately, which both came back normal. Amen! I was happy and able to move on with my life and enjoy my new baby boy, but then some months later, I started to feel some shortness of breath, constant yawning and a constant feeling to take in deep breaths, which can all be again associated to my anxiety disorder, But what really worried me was a couple of instances of waking up gasping for air. So again I did what any normal hypochondriac would do and went back to sir Google, and all my symptoms fell in the category of a respiratory onset, of course it did.

My question is would it be possible to still have ALS even after a very thorough negative EMG 7 months ago, is there a chance it was done to early, and should go back for another one? Just to make sure I’m good. I’m sorry for the long post and I do appreciate what ever help anyone can give me.
 
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Congrats on the new baby and your commitment to move past your past, Crios. You have good insight about the likely source of your issues. However, sleep is also a possible culprit, esp. with a toddler.

You might ask your doc about a sleep study -- the more meds you are taking for the PTSD/anxiety, the greater the possibility that your sleep architecture could be disrupted and/or they can even contribute to apnea, which would explain gasping for air (which is also more likely if you are obese or smoke).

Best,
Laurie
 
Thanks for the reply Laurie, and I agree with you it could be as simple as meds and sleep. I recently got back on my sleep meds and that could be the reason for the sleep issues. But I’m not obese nor do I smoke and I keep myself in fairly good shape. I just don’t understand these sudden new symptoms. Like I said before I had EMG done about 7 months ago, which was pretty thorough and no findings. I just hope and pray that it’s just my anxiety and not something worse. But thanks again for your reply. Have a blessed day.
 
Hi, Crios.

Thanks for serving and for making the sacrifices that come with it. Many of us are vets, too.

From what you say, I say No ALS. Lots of stress, but no ALS.

Your questions: "would it be possible to still have ALS even after a very thorough negative EMG 7 months ago, is there a chance it was done to early, and should go back for another one? J

It's possible for an EMG to be wrong. But you saw an ALS specialist, so no, you're cleared.

I wish you the best. Babies are a magical wonder.
 
My housemate is also in excellent shape and never smoked. He is tall and muscular. He needs a cpap and we found out by accident. He said he woke up frequently in the night but we lived in separate homes so I just thought it was something other than his breathing. Then in 2016 we evacuated both our homes and went to Orlando to ride out the hurricane. I brought my dog so we got a suite with two beds. I took all my night meds and he took his one med. I'm a very light sleeper and woke up several times with him snoring. The last time I decided to observe him. I saw right away he had apnea. His breath would stop, then he would gasp for air and wake up, not knowing he was snoring or gasping.

I convinced him to go to a Pulmo and get a sleep study and PFT. He has mild COPD (probably from living with chain smokers growing up) and his sleep study showed moderate apnea. He has been on a c-pap ever since. We were both shocked with the mild COPD because he was a marathon runner and triathlete.

Anyway, the c-pap made a huge difference. He's pretty compliant with it.

I'd request a sleep study and a pulmonary function test (the basic ones they do in the doctor's office.)

I really don't think you need to worry about ALS.

Thank you for your service to our Country.
 
Thanks for the response Mike and Kim, and for your time with my concerns. And also thank you for your service Mike!!! Im waiting on a referral that was placed for a sleep study, and I went to see a pulmonologist who said that my breathing test was withinin normal range, even though it was on the lower side of normal. My wife tells me that I sleep normal and I don’t snore. My EMG was done by ALS specialist and like I said before it was done thorough. She poked me every where even in my back, where I’ve read can help detect any issues with the lungs. So I really pray that it is just my Anxiety, believe me this is not the time I want to be right. We made a appointment to see a neurologist today and hopefully he can put me in for another EMG. My life has just started over with a new baby and new family, and I just want to enjoy them. But thanks again for your responses and your time. I pray that the lord continue to bless every single one of you.
 
Scheduled my second EMG for next week God willing everything goes well. Again I want to thank everyone that responded to my post.
 
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Quick question, in regards to ALS respiratory failure, is it considered UMN or LMN, and would it be detected on a EMG?
 
LMN, and yes, it would be detected by EMG of muscles in the thoracic region. Respiratory “failure” would be detected by pulmonary function testing, arterial blood gases (which measure blood pH, CO2 and O2 concentrations, and by observation of the patient.
 
Depending on the muscles involved and how they're involved in respiratory insufficiency, UMN and/or LMN damage can be involved. Yes, these are some of the muscles that are tested in an EMG, but more importantly, when you had your EMG, you were having symptoms in your arm. The fact that the EMG was clear even in areas with symptoms is the strongest possible argument against ALS.

I don't see any point in another EMG, but there is much that you can do to improve your breathing, from trying a humidifier to a thicker pillow, to a different sleep schedule and/or thermostat setting. You might also benefit from an OTC nasal steroid like Nasacort and/or a non-sedating antihistamine like fexofenadine for allergies. You say you're not obese, but maybe as a new dad you're not getting as much aerobic exercise as you could?

Anyway, you get the idea -- rather than worrying about ALS or a respiratory disease, you can now direct your energy toward feeling better. We wish you all the best in doing so.

Best,
Laurie
 
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Thank you Karen for answering all my questions. I have another EMG scheduled next week, 2 within a year. But based on the information you gave me I should be fine. I guess all of my breathing issues are connected to my anxiety. Because all the exams you mentioned has come back normal. Thanks again!!!
 
Thanks again Laurie, for taking the time to answer my question, and so thoroughly. I don’t want to waste you guys time with my health anxiety, but I do appreciate your response. I pray that everyone on this forum be given supernatural strength, and peace regardless of the circumstances. Thanks again for answering my questions.
 
My EMG is today really anxious I pray all these symptoms is all in my head. I mean two EMGs in 8 months should rule out anything sinister.
 
Good luck. I expect you will get good news

Please come back and report
 
Thanks a lot I really appreciate your support and will definitely update you guys as soon as I’m done. Again I really appreciate all the support you guys give!!! This has been a real hard year for both my family an I, all over some muscle twitches. I strongly recommend to anyone googling symptoms to try to refrain, let the doctors do what they do. Google will always give you the worst case scenario.
 
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