Jbarn
New member
- Joined
- Sep 23, 2021
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
I would appreciate someone chiming in on this. This is my first time here, thank you for your time.
I’ve had laryngeal reflux for 13 years, I don’t get heartburn but a lot of sore throats, post nasal drip, etc. with that being said, in 2015, I had the LINX reflux management device (a bead of magnets the go around the esophagus to augment the lower esophageal sphincter) installed. This device is anchored 1mm from the vagus nerve bundle. Ok, fast forward to 2018, I started having some issues swallowing and had a EGD (camera that looks into your esophagus and stomach) that found I had presbyesophagus (esophagus forms corkscrew shape), the GI said it came from chronic reflux, but, the year before I had one done to check the effectiveness of the device and the esophagus was perfectly normal.
Fast forward to December 2019, I started having muscle fasciculations and in April 2020, had a EMG/NCV conducted at a MND clinic, both tests were normal. The device was causing heart attack symptoms (it was theorized it was hitting the vagus nerve causing heart attack symptoms because a thorough cardiac work up found no cardiac issues), and swallowing issues. In November 2020, I had the device removed and everything seemed to resolve.
In May 2021, I had another EMG done at the same MND clinic just to be sure I did not have ALS, and the tests were normal. At that time 17 months had passed since the start of fasciculations and 13 months since the first EMG/ NCV. None of the test up to that point tested the bulbar muscles.
In June 2021, I once again started having trouble swallowing and burping, and had another EGD and a High Resolution Manometry conducted. The EGD was normal but the Manometry revealed the esophagus was not functioning well, it showed the muscle was weak.
In September 2021, my VA doctor wanted me to have another EMG/NCV, because a head to tailbone MRI could not account for my swallowing issues and fasciculations. This time I went to UT Southwestern Medical Center, which is a certified ALS research hospital, and medical school. The doctor who did the study is a professor for MND at the hospital and the tests were once again normal. She tested many areas on the body and did test the 7th cranial nerve (for bulbar onset) but no other facial or neck areas.
So, 20 months, 3 EMG’s/ NCV’s, all by MND experts, swallowing issues, no breathing issues, no speech issues, but about 3 months ago I was tapping my right index finger on my knee and all of a sudden my finger went weak, no matter how hard I tried I could not tap any harder or faster. I was only able to tap around 40% speed and power of normal. It lasted about 30 to 45 seconds, then it went away, hasn’t come back since. When I mentioned it to the doctor she told me ALS doesn’t typically present that way, but she didn’t say never. So there it is, sound like als?
Thanks again
I’ve had laryngeal reflux for 13 years, I don’t get heartburn but a lot of sore throats, post nasal drip, etc. with that being said, in 2015, I had the LINX reflux management device (a bead of magnets the go around the esophagus to augment the lower esophageal sphincter) installed. This device is anchored 1mm from the vagus nerve bundle. Ok, fast forward to 2018, I started having some issues swallowing and had a EGD (camera that looks into your esophagus and stomach) that found I had presbyesophagus (esophagus forms corkscrew shape), the GI said it came from chronic reflux, but, the year before I had one done to check the effectiveness of the device and the esophagus was perfectly normal.
Fast forward to December 2019, I started having muscle fasciculations and in April 2020, had a EMG/NCV conducted at a MND clinic, both tests were normal. The device was causing heart attack symptoms (it was theorized it was hitting the vagus nerve causing heart attack symptoms because a thorough cardiac work up found no cardiac issues), and swallowing issues. In November 2020, I had the device removed and everything seemed to resolve.
In May 2021, I had another EMG done at the same MND clinic just to be sure I did not have ALS, and the tests were normal. At that time 17 months had passed since the start of fasciculations and 13 months since the first EMG/ NCV. None of the test up to that point tested the bulbar muscles.
In June 2021, I once again started having trouble swallowing and burping, and had another EGD and a High Resolution Manometry conducted. The EGD was normal but the Manometry revealed the esophagus was not functioning well, it showed the muscle was weak.
In September 2021, my VA doctor wanted me to have another EMG/NCV, because a head to tailbone MRI could not account for my swallowing issues and fasciculations. This time I went to UT Southwestern Medical Center, which is a certified ALS research hospital, and medical school. The doctor who did the study is a professor for MND at the hospital and the tests were once again normal. She tested many areas on the body and did test the 7th cranial nerve (for bulbar onset) but no other facial or neck areas.
So, 20 months, 3 EMG’s/ NCV’s, all by MND experts, swallowing issues, no breathing issues, no speech issues, but about 3 months ago I was tapping my right index finger on my knee and all of a sudden my finger went weak, no matter how hard I tried I could not tap any harder or faster. I was only able to tap around 40% speed and power of normal. It lasted about 30 to 45 seconds, then it went away, hasn’t come back since. When I mentioned it to the doctor she told me ALS doesn’t typically present that way, but she didn’t say never. So there it is, sound like als?
Thanks again
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