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 (the worst of all the MND's). Immediately after his diagnosis, we began doing research into other possible illnesses that mimic ALS (if you're not familiar, its the ice bucket challenge disease that has no cure), and we found some vitamin deficiencies that cause the same symptoms. Armed with this new information, my brother headed to the Mayo clinic 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.

I appreciate this information so much! ALS is very rare, so keep that in mind as you go through testing. From what I understand, it is way more likely for RNY patients to have some sort of malabsorption issue than Sleeve patients, so it is more likely that a deficiency or malabsorption is what is causing your problems. I mean...obviously, I'm not a doctor so I'm just relaying my thoughts based on the research I have been doing. I hope all goes well for you!

Thanks so much for the link! Interestingly, I have already seen it. I had to google almost all the medical jargon .lol I don't have time right now to find the links to the sources I found. I do know that one of the sources was the Mayo Clinic and maybe Jama??? The findings in these sources were for all bariatric surgeries, not only Sleeve, so that is important to note. I, in no way, want people to think I am negative about the sleeve surgery. I completely understand that my brother's diagnosis is probably ALs, but what does it hurt to investigate all avenues??

https://pubmed.ncbi.nlm.nih.gov/27173817/ Like I said, its a longshot, but there is info out there if you do more than a 5 min search. I have been doing hours of research because if there is even a slim chance that my brother has been misdiagnosed, I would like for him to live. My brother's doctor (neurologist) has also seen 2 other sleeve patients that have similar symptoms.

Thank you so much for your response! As I stated from the beginning, I understand that this is a longshot. Interestingly, my brother's neurologist has had two other sleeve patients with the same symptoms...or at least the foot drag/ falling. I don't think they were diagnosed with ALS, but this for sure made us feel the need to dig a little deeper. I mean...what does it hurt to explore all angles? I am sure you would do the same if someone you loved was going to die from one of the most horrific diseases. Thank you for the name of the doctor. We are close to LA, so it might be worth an appointment.

There are actually studies that indicate that 5% of WLS patients develop neurological problems. Also, there are some reported incidences of vitamin deficiency and nutrition malabsorption that can cause symptoms that mimic ALS. I am well aware of the fact that my brother may have gotten ALS if he had never had the sleeve surgery, but I think it is worth investigating. I also had the sleeve surgery myself a little over a year ago and have had my own set of problems...minor in comparison to ALS. My brother lost way more weight than me and went to a different surgeon, so there is absolutely no connection with our differing outcomes. I appreciate your comment and concern, but I am really just looking for people that may have some similar experience or helpful information.