Connection between weight loss surgery and ALS??

[cajamihutch]

This is a shot in the dark , but I am reaching out to see if anyone else has had or heard of this:

About a year ago, my brother had the sleeve surgery and started dropping weight super fast. He was doing great, but after about 6 months, he started to develop a foot drag/drop and difficulty grasping things with his right hand. He didn't think much of it, but soon after, he started falling down/tripping (hard). He fell, out of the blue, in the kitchen and chipped his front tooth, and he also fell in the drive way on his way to get the mail (causing a concussion).

He went to his primary doctor who ran a bunch of tests. His doctor couldn't find anything out of the ordinary from the tests, so he sent my brother to a neurologist. The Neurologist ran a whole bunch more tests and still nothing. Finally, my brother was sent to a major hospital in Los Angeles because his symptoms continued to progress. After several more test and comparing results with prior test results, it was revealed that he has motor neuron disease. The type he has been diagnosed with is ALS.

Immediately after his diagnosis, we began doing research into other possible illnesses that mimic ALS , and we found some vitamin deficiencies that cause the same symptoms. Armed with this new information, my brother headed to the mayoclinic in Minn. to see if he had been misdiagnosed and get a second opinion. Within the first 30 min. of his visit with the specialist, he was confirmed to have ALS without having anymore testing.

I guess I am writing this in the slim chance that someone else has had this happen to them, and if there is any helpful advice as to how to find a doctor who will look into alternative options. It just seems so fishy that he was perfectly healthy before surgery, and within a year he has been given a death sentence! We have read many studies on the (small) connection between bariatric surgery and neurological disorders. If anyone knows any helpful info, we would love to hear from you...thanks so much for reading my post.

 

[Nikki J]

ALS begins before a person notices symptoms. People with higher bmis have been found to progress more slowly. I am wondering if the weight loss accelerated the onset of noticeable symptoms that would have showed up a little later.

most everyone looks for reasons why this happened. If it is not familial als with an identifiable mutation there isn’t a good answer.

it sounds as if he had 2 concurring opinions and they presumably tested for mimics and deficiencies. Make sure they did. Be careful not to get taken in by various quacks and scams. There are plenty of misguided or evil people who will tell you they can cure ALS with vitamins and herbs

 

[lgelb]

If you would care to post his latest de-identified EMG, we could be more helpful, but if Mayo confirmed it, the diagnosis is unlikely to change. Many people who are found to have ALS are healthy and often were in the armed forces and/or athletes before diagnosis. I can certainly understand ruling out potential correlates of rapid weight loss and surgery like nutritional imbalances, but those would not show up the same way on an EMG nor in physical testing.

Best,
Laurie

 

[cajamihutch]

Thank you so much for your reply, I will try to get the EMG to post.

 

[lgelb]

Use the attachment icon or the image icon next to it, just above where you type. You can take a snapshot or screenshot, or post the PDF.

 

[Lisaescobar]

This happen to me I had gastric sleeve 2017 started noticing my footsteps were off and now I can barely walk Diag 2019 ALS
I went to Mayo last week they reconfirmed diagnosis as well I was perfectly healthy before just was fat.