Please look over emg and notes. Thank you.

Thank you so much. I wish all of you well.
 
lgelb said:
You can ask about a sleep study and I would certainly follow the advice to discontinue the two medications that are evidently not needed, that can both affect sleep and breathing.

The feelings of weakness can relate to not getting enough refreshing sleep, and your stress overall.

As suggested, I would also get more/better counseling to address your fears and consider a bodywork class that focuses on gentle stretching, which can make it easier for you to tap into your [normal, as shown on the tests] lung capacity when exercising and in sleep.
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I have had an in home sleep study. They said no sleep apnea.
 
I thought up a new question. He never stuck me in the spot with the actual atrophy on the palms of my hand. Does that make a difference. Not nervous just curious. I actually do have atrophy as identified by pcp, neurologist and muscular neurologist.
 
No it does not. The places that are appropriate to emg are often not where one would think My initial symptom was in my ankle. The examiner did not emg there. She said perhaps it is this muscle and emged my leg some distance away. She was correct unfortunately
 
Thank you. I am so sorry about your situation. I promise I am going to be donating to an als charity. So many people have helped me here.
 
Hello again. I was looking at the blood test I had before my EMG. My creatinine was 0.62 it then went up to 0.7 it's been like that since 2021 before that it was 1 something. My creatinine kinase is 30L. This was all done before EMG. Is this something I should worry about. My Dr. has said nothing. I am very sedentary and do nothing. Started physical therapy Tuesday. Thank you.
 
darkgravityrain said:
Will repost. Thanks
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Thank you so much.
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I have a new pulmonary function test report. Was wondering if anyone has ever heard of SUPERNORMAL FVC and FEV1 with normal range. I read SUPERNORMAL in 9 out of 10 articles mean strong muscles. One article said weak muscles and one said something about CO2. The last two scared me.
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I have never encountered the term supernormal. Your fvc at baseline was way above 100% of predicted. In no world is this a bad thing. When mine was over 100% clinicians consistently told me how great it was. I do not yet have respiratory compromise

You have asthma and a smoking/ vaping history. If you are still doing either stop. You have no signs of ALS on anything you have presented. It is time to leave here
 
Do discontinue the valproate and carbidopa/levodopa as per above that you don't need but also get and stay on treatment for the asthma, including the non-medical things that help it like reducing stress, getting more/better counseling, or doing more nature walks.

Making sure your other issues like diabetes are well-controlled can be also be a big part of feeling better. I note smoking/vaping is in the past tense on your report and hope that's true, but inhaling anything besides room air should not be on your dance card at all.

I hope that you can leave ALS behind and look forward to the greater health and happiness that is in your power to achieve.
 
lgelb said:
Do discontinue the valproate and carbidopa/levodopa as per above that you don't need but also get and stay on treatment for the asthma, including the non-medical things that help it like reducing stress, getting more/better counseling, or doing more nature walks.

Making sure your other issues like diabetes are well-controlled can be also be a big part of feeling better. I note smoking/vaping is in the past tense on your report and hope that's true, but inhaling anything besides room air should not be on your dance card at all.

I hope that you can leave ALS behind and look forward to the greater health and happiness that is in your power to achieve.
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Thank you so much. It is appreciated.
 
I have a new question. Thank you. When I am falling asleep my tongue goes up to the roof of my mouth and clicks.(dr.google says that's a bad sign. Google is wrong a lot that's why I came to the pros). I don't think I have tongue fasciculations. Also when I am sleeping and breathe through my mouth my lips pop. My tongue also burns when I eat and it looks symmetrically smaller at the tip. Also a lot of spit in my mouth. My eyes have bags under them and the left eye waters quite a bit.

I can still whistle and my tongue doesn't point in one direction when stuck out. I do have grooves in it though. When I was given an emg he tested my neck behind the Sternocleidomastoid. Is that sufficient to test for bulbar. All he said was no intracanalicular lessons. Does this sound like bulbar symptoms. The atrophy on my wrist and hands doesn't seem to be getting any worse. I was wondering if the limb emg missed something and it's changing. Going to Cleveland clinic on October 10th. Thank you for listening.
 
Sternocleidomastoid is a bulbar screening site.

That click thing doesn’t sound familiar or worrying

Let us know after your visit on October 10 what happens
 
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