Im just trying to get some answers...

Lisajohn

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So it all started June 21st 2019.. I went for a CT for some stomach issues. I was under a lot of stress during this time and noticed twitching in my legs, arms, torso and back.

During the exam they found my lungs had scattered bilateral ground glass opacities found at the bottom of my lungs. This was at the end of June. I got really scared and went to the ER on july 4th with extreme anxiety and they performed an Xray and took a blood panel for my twitching. I had no deficiencies. I was diagnosed with pneumonitis in both lungs from top to bottom. Said it was basically caused from chemical inhalation. I dont work and cant see how this happened or when since I never even experienced any issues. He told me he'd prescribe me with a steroid only with my extreme anxiety he feared it would only make things worse. So I was sent home and told to go in if my symptoms got worse or in a week to see if it got better. I was leaving out of state so it made things complicated. (I still had no symptoms)

I have had pneumonia in the past without knowing but it cleared up. This was 2 years ago. Fast forward to July 11th I went into a totally different imaging place and was told I had pneumonia and was prescribed an antibiotic. I still dont know if it got better, was the same or what. So annoying.

It's been 1 full month and I'm constantly twitching some day worse then others. I do have some shaking when bending to pick things up and my legs do feel tired upon walking up stairs. I took all my antibiotics and went know if things are better until the 30th when I go into my doctor. Btw, my lungs sounded clear to my pcp each visit throughout June and July. Does this sound like respiratory onset?

I do have slight slurring every so often but feel I may be over thinking. Not nasally just slurred when saying words like "scholl starts" i have trembling throughout my body and upon waking i do have a heart rate of 90 bpm..Im very active and usuall have a resting heartrate of 61 bmp which in the last 30 days has increased to 76bpm resting. Does any of this sound concerning. My balance seems ok. My legs seem stiff in calves and my hands seem to feel cramped when driving.

I'm so worried. Can anyone tell me if this sounds like anything anyone has experienced.
 

KarenNWendyn

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This is not consistent with respiratory ALS. There are numerous possible conditions that can affect the lung tissue to cause a ground glass appearance on an X-ray. But ALS isn’t one of them. ALS weakens respiratory muscles but it does not affect lung tissue.

A pulmonologist can help you with the problem you describe.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described.
 

Lisajohn

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I guess I was just more concerned because I thought muscle failure wasn't common with respiratory onset. Is leg shaking when bending down a sign of muscle weakness? I'm also wondering if the pneumonia was caused by aspiration maybe while sleeping?
 

lgelb

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If you doze or want to even after a night's sleep, a sleep study might be worth pursuing. But aspiration while sleeping would wake you up, and aspirating what? Of course, if you eat late before bed, worth it to stop for many reasons.

Leg shaking when bending down is most often due to some overall problem, diet that can be improved, or just not feeling well, not ALS.

If your heart is higher than is comfortable/usual for you, that too can make you feel bad. But there are chicken and egg questions.

I agree with Karen that with all the questions about your lungs and the X-ray findings, a pulmonologist (who can also order a sleep study if needed) should be your next stop. And, like her, I see no suggestion of ALS in this.

Best,
Laurie
 

Lisajohn

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I'm just worried sick. Maybe I'm trying to correlate my symptoms as to why things might be happening. Origanally I had severe back pain at the beginning of June. Had an MRI and it showed thoratic bulging disc and l2-3 4-5 hernias. That's when anxiety hit hard. Then my bowels were crazy and I was sent for a CT and stool samples which resolved after normal Ct so maybe it was nerves. Thats when the twitching started about 2 weeks after back pain and 1 week after MRI. My biggest concern is the twitching at this point. I wasn't concerned about my lungs until the abdominal CT which was after MRIfor my back where it was suggested to do an additional CT for my lungs. Of course, I started to feel more worried it might be something worse. They did recomend a chest CT but when I told the ER doctor he suggested to not to unnecessary CTs and did a Chest xray. That's where he told me I had pneumonitis in both lungs. What confused me is just 10 days later at a different lab without comparison said it was pneumonia (so which is it and why completely different?) and gave me antibiotics. I feel like nobody knows what I have. Of course I was searching about twitching and came across ALS. Freaked me out. Recently, I saw rare cases where it could be respiratory onset. Which then I jumped to conclusions since my lungs were showing inflammation. There just isn't enough early symptoms for Respiratory onset so I dont know what or how it progresses or the initial symptoms. Then I thought maybe saliva may be why I got pneumonia possibly while sleeping and I didnt know it happened. Idk. I'm scared and I dont see anyone (neurologist) until the 31st which will be 6 weeks since initial twitching started. I am going to request another xray on my lungs but wondered if I should go ahead with CT. It just seems like too much for me and I'm starting to feel like a hypochondriac. I normally dont go into the doctor for anything. Like I said before, I'm usually physically active, I eat very balanced and organic so this isn't a norm for me. The more I read the more I felt I had ALS, which scared me. I'm 38 years old I have 4 children and I just worry. One day I felt fine and the next thing you know I feel like I'm falling apart at the seams.
Again thanks for answering some questions. I appreciate it so much especially because I feel so beside myself.
 

KarenNWendyn

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“Pneumonitis” is just a fancy term that basically means inflammation in the lung tissue. It encompasses infections, autoimmune conditions, malignancies, toxic exposures, and even scaring from past infections. “Pneumonia” is usually used to mean infection. Pneumonia is a type of pneumonitis, and sometimes the terms are used interchangeably. E.g. “infectious pneumonitis”.

“Ground glass” appearance refers to an interstitial pattern on X-ray, meaning that inflammation or infection is in the interstices of the lung tissue. Sometimes scarring from past infections can cause this appearance, but some of the other conditions are potentially serious. Many are treatable. It’s worthwhile getting it checked out. A pulmonologist can help address your lung issues.

You have to realize that none of that goes along with ALS. As I said earlier, ALS involves respiratory muscles, not lung tissue, so there is no pneumonia/ pneumonitis in ALS, and a chest X-ray would be normal.

I recommend you work with a primary care physician to address all your concerns including anxiety, but also consult with a pulmonologist for your lungs.

Twitching is meaningless as I mentioned earlier. Up to 70% of normal healthy people have twitching to varying degrees.

I don’t see ALS in your post at all.
 

Lisajohn

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Thank you so much!! I am at some peace and am so thankful for your time. .
I will post any updates as I do see a neurologist on the 31st. Maybe it will help other when it comes to their twitching.
 

Lisajohn

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I am 2 days away from my Neurologist appointment. My kids started school today and I noticed the past few day walking up the stairs, stretching or flexing causes my legs burn. I had some paperwork to fill out today and while filling them out my upper arm and hand started to feel the same way. Like it was overly tired and I had to lower my arm to relieve the muscle burn. I'm so confused as to what muscle weakness and spasticity is. I'm so scared Als could be a option. I almost dont want to go in out of complete fear. I wish I had someone to go with. Is there any questions I should ask or anything I should do before my visit?
 

Nikki J

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The big question is what is wrong with me? At the end of the appointment if you do not have a clear direction then ask what is in the differential now ( diagnoses they are considering) and what is the plan to narrow it down.

A bulleted concise timeline of symptoms with concrete and specific examples is helpful
 

Lisajohn

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Yesterdays Neurologist appointment went ok.. he looked at my back xrays and said he saw nothing alarming. He had me walk on my toes and heels, looked for tongue twitching, checked my reflexes and said they were brisk. Is that a good thing? He asked if I've had muscle weakness and from what I've read tiredness isn't weakness so I said no. He checked my toes and leg strength as well as my arms. He did some vibration tests. Checked my gait and balance with and without my eyes closed. He said I appeared to be having anxiety but other than that he said I was the best he's seen in months compared to other patients. He did say he would do a muscle test (emg?) If it made me feel better but he didnt reccomend it. So for now I'll take amitriptyline like he suggested for 6 weeks and do a follow up then. Thanks for the support during a hard time. I'll check back to update after six weeks if anything changes.
 
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