BuckInNyc
New member
- Joined
- Sep 12, 2018
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- NYC
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?
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?