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BuckInNyc

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To preface — I’ve read the READ FIRST posts, so I hope all details below are relevant.

29 year old, smoker for 8 years.

About 3.5 years ago I noticed minor tightness in my throat that I payed no attention to at first. Over the course of time I became more aware of slightly labored breathing. About 6 months later, I started to feel slight general weakness, moreso in my extremities. I’d say it was bilateral and not specific to one limb. Then came the twitching. Mostly in my calves but over the course of 4-5 months it began to spread pretty much all over my body (weirdly my lung felt like it was twitching as well)

The GP quickly dismissed my shortness of breath as smoke induced asthma and the twitching and weakness to lack of sleep and an fairly unhealthy diet. I changed my lifestyle a bit, but all three symptoms not only remained, but became more prominent and progressive. After becoming a hypochondriac I was of course brought to the possibility of ALS. Also around this time I started to get a dry cough and SOB was beginning to happen at rest and minimal exertion. I could still run a mile on the treadmill and worked out, but I still felt very off. So I get referred to a pulmonologist for the breathing issues. Everything comes back pretty normal (PFTs, X-ray, CT scan), and the pulmonologist attributes SOB to asthma and anxiety.

About 2 years ago now I felt more weakness in all of my muscles (weakness meaning amount of weight and reps I did working out), and the twitching feeling like it was all over my body all day every day. Finally get a referral to the neuro. I tell him all my symptoms and my worry of having possible MND. He gives me a neuro exam and tells me everything seems normal (I felt like I struggled with strength test) and that I didn’t show signs of clinical weakness. Nevertheless he performs an EMG on me. I believe it was my right arm, since I had bilateral discomfort and weakness. I believe the EMG cames back normal (it was so long ago) and he tells me it’s most likely BFS. I go on my way not paying any more attention to the twitching and weakness I feel. But it’s never gone away. Things became a little more difficult and I found myself not able to have sex because after 15 seconds I feel like I need a break. Something has always felt off for the past few years but it is still getting worse.

About two weeks ago I started feeling much much weaker in my legs, arms, fingers and hands. I haven’t dropped a phone out of my hand, but it’s ever so slightly more difficult to pick it up off the table. I also have experienced much more cramping, Muscles feel like they’ve been exerted many times by just lifting them up once. So I’m that sense I haven’t started “failing” yet, but I think I’m on my way to that?

Of course I get back on the internet and here I am again, wondering if I’ve had ALS this entire time and just have had incompetent doctors.

I’m well aware the chances of MND are extremely slim, but my quality of life has significantly decreased over the past through years.

I’ve made a follow up with my neuro for next week, and l’m thinking about asking him these questions:

1) Can subtle progressive SOB be linked to bulbar onset MND? Is it ever the 1st symptom of ALS?Would something have shown up in the CT scan on my lungs?

2) what’s the margin of error for a EMG (neuro has a subspecialty in EMG)? Should I have another one done and if so, what is the best limb / tongue to have the test done on at this point?

3) Because I’m able to markedly show the progression of my symptoms, it can’t be all in my head, right?

I feel my body is falling apart. Thoughts?
 

Nikki J

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Ask your neuro. Listen to what he says

For a non neurologist answer to your questions
1 respiratory onset ALS is different than bulbar. It is rare 5% of ALS. It would not show on CT It would however be progressive usually fairly quickly 3.5 years without obvious and severe respiratory failure? Very very very unlikely.

2 the emg is as good as the examiner. It is up to your neuro based on your exam to decide if another emg is warranted. His exam will also pinpoint what muscles

3the mind is powerful so yes progression and disability can happen when it is “ all in one’s head”. Symptoms and even clinical findings of certain kinds are very real. I don’t know if that is your answer but listen to your doctor with an open mind
 

KarenNWendyn

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Since you saw a pulmonologist, you probably already received the lecture about smoking and health. Good! Ok, I’ll add a little more to what you were probably already told.

Smoking affrects every cell in the body. Smoking causes premature aging. Smoking can definitely cause your throat to feel tight. Smoking also impairs circulation which can affect sexual function and energy levels. You already know how smoking affects breathing. We also see more back pain and joint pain in smokers.

Add hypochondriasis on top of the very real effects of smoking, and you have a recipe for multiple physical dysfunctions amplified into a myriad of diseases.

I’m glad you like to run, have sex, and are willing to make some lifestyle changes. There’s hope for you. Please work on the anxiety and lose the smoking.

We don’t see ALS in this picture at all, but I’m sure the neurologist will reassure you and answer additional questions.
 

BuckInNyc

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Hi again

My neuro appointment was pushed to next week.

I’ve just noticed possible muscle atrophy in my right forearm near my elbow. The muscle has started to feel pain whenever I’m pushing to open doors and I’ve had a twitch every so often in the arm. Is pain sometimes associated with ALS?

I’ve also noticed my feet ever so slightly scraping the ground when walking every once in a while.
I understand limbs usually start declining at different times - should I feel a little better knowing this is happening to multiple limbs at once?
 

lgelb

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Noticing your own muscle atrophy is like counting the wrinkles. It's only relevant if a doc confirms.

My feet scrape. I drop things from my weaker hand all the time. I am typing this on my Bluetooth keyboard after spilling coffee in my laptop from that weaker hand.

Progression is in the eye of the beholder when there is no clinical weakness or abnormal tests. But as Karen says, smoking not only kills but ages you prematurely. If you can find your way to giving that up, you will be in a better position to tone up, stretch out and feel better. But if you can't as yet, you can still work on all of the above to feel stronger. It is in your power.

You ask, can it all be in your head. Well, we all have these twitch/pain/weak feelings at some point. But it's only your mind that can elevate them above what they really are -- only your mind.

If you really get fit and still have issues, it would be time to go back to an internist (who can also write you an antidepressant if you want, to help with smoking cessation).

Best,
Laurie
 
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