[Jerry]

Thanks again.  I had a EGD in July of this year, squeaky clean.  I saw an ENT a few months ago, no issues.  The first EMG/ NCV study was conducted (5 months after symptom onset) due to muscle fasciculations, myoclonus, and cramps. The second one (done 13 months after the first) was because I wanted to be sure that the first one was not done too early.   The third one, was done because a head-to-tailbone MRI, could not explain the fasciculations or swallowing issues.  Hope that answered your questions.

[Jerry]

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, 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 sense.  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

[Jerry]

Sorry I’ve been away so long.  I agree, but I’m having my doubts.  I’m still having new issues arise with no answers.  I’ve voiced my new concerns with UT, but they are not willing to test me.  They just keep telling me I don’t have it.  When I told them of my new symptoms they said I should seek help from the disciplines that cover swallowing and chewing issues.

[Jerry]

How many visits were with MND specialists?  My jaw started hurting 3 days ago while eating, out of the blue.  How did they come to the conclusion you had possible als, and why are you through after your next EMG?

Its good talking with you.

[Jerry]

I appreciate the advice.  I have not had genetic testing, but my mother told me no one on either side of the family has ever had anything like this, mostly high blood pressure, and a little cancer.  I just guess I have garbage genetics.  The thought process the doctors have is “3 EMG/NCV in 21 months, 3 MND specialist, not als”.  I had to start going to a pulmonary doc last year because reflux was affecting my airway.  In June of ‘20, my Forced Vital Capacity baseline was 6.77 liters, 10 months later in April of this year it was 5.4.  I never caught it because when they gave me the results they just told me that the overall test was better than the previous.  I have another appointment with a MND doc at UT on 13 December.  When I told her about the pulmo study she just said “we will discuss it at your next appointment”.  However, thus far, she has been staunch about me not having als to the point of her replies being on the snippy side, until now, now she wants to discuss it. The only caveat to this is I had another PFT yesterday, and do not yet have the results.  If my FVC is close to that of last year, then that’s good, but I have my reservations.  Have you ever known someone with symptoms and timeframe like this where it was or wasn’t als in the end?  Just like the gentlemen Mark S, who has been talking with me, I too started having (just 3 days ago) a sore jaw while eating.  Out of the blue, no reason why.

Thanks for your insight.

[Jerry]

I assume you have yet to be diagnosed?  How long have you had symptoms?  How many EMG studies have you had?  I couldn’t agree more, all the waiting, the money, taking days off from work, stress on the family etc. etc.

[Jerry]

Thanks for the advice.  The questions rolling around in my mind are:

1. How often does ALS start in the esophagus?

2. The neurologist who conducted the EMG in September of this year told me that if my symptoms that started in 2019, were be caused by als, it would have showed up on the testing she did. Would you agree with that?

3. If what I have is in fact caused by als, wouldn’t it make sense that more than just my esophagus would be weak after almost two years of symptoms, and shouldn’t it show up on several of the bulbar areas?