connection between sleeve surgery and motor neuron disease / ALS?

cajamihutch
on 10/18/20 10:07 am

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. He felt like the doctor dismissed the information about WLS and diseases that mimic ALS without a clear explanation. 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. From what I have read, there are reported incidences of some vitamin deficiencies and nutritional malabsorption that can cause symptoms that mimic ALS. Like I said, I know it's a long shot, but I still think its worth investigating. I am just afraid that his doctors are not looking into the connection between rapid weight loss and neurological problems. If anyone knows any helpful info, we would love to hear from you...thanks so much for reading my post.

hollykim
on 10/19/20 7:53 am - Nashville, TN
Revision on 03/18/15
On October 18, 2020 at 5:07 PM Pacific Time, cajamihutch wrote:

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. He felt like the doctor dismissed the information about WLS and diseases that mimic ALS without a clear explanation. 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. From what I have read, there are reported incidences of some vitamin deficiencies and nutritional malabsorption that can cause symptoms that mimic ALS. Like I said, I know it's a long shot, but I still think its worth investigating. I am just afraid that his doctors are not looking into the connection between rapid weight loss and neurological problems. If anyone knows any helpful info, we would love to hear from you...thanks so much for reading my post.

I have never seen anyone post that they developed ALS aft the sleeve, in the 10 years I have been on this site.

you mention vitamin decencies, is he up to date on his labs/ been supplementing appropriately since his surgery?

sadly , and I'm sorry to say, it appears this would possibly been his diagnosis even if he never had had the sleeve.

 


          

 

cajamihutch
on 10/19/20 1:48 pm

Thank you for your reply. I guess I am putting this out there just to see if others have heard of a connection. My brother's doctor (neurologist) has seen the same symptoms in 2 other Sleeve patients over the years. I am not sure if these other patients ended up being diagnosed with ALS, but on the slim chance that it could be a deficiency or malabsorption, I am putting this out there. I am completely aware that my brother probably had ALS from either genetics or something other than his surgery, but we are just investigating all avenues. He has had lab work done by both Cedars-Sinai and the Mayo Clinic, so I know it is a grim situation, but the part that has us wondering is that he just mentioned the malabsorption thing to his doctor, and the doctor just said "Hmm? It's something to look into." but we don't feel like anyone is looking into it.

brenda.hadix
on 10/20/20 11:11 am

I had Gastric Bypass Surgery 1 year ago this past July.. I weighed 340lbs pre surgery.. as of yesterday 10/19/20 I weigh 135..

About a month ago I developed foot drop in my right foot.. I had been kind of wobbly feeling for a good while prior to the foot drop.. and I started falling a lot.. tripping over nothing.. I didn't think too much about this because I was born clumsy.. I also had coordination problems.. again I didn't think too much about this since I have never been coordinated..

But the day the drop foot happened my right leg suddenly felt pretty wobbly.. I got out of my truck to go into the store and about 5 ft later.. I could not take a step and about fell flat on my face.. luckily a lady seen I was having a problem and came to my side and allowed me to steady up.. my husband got out of the truck to help me.. I was in a complete panic.. I could not take a step.. I had on flip flops which made it worse.. I started to cry telling him I can't walk..

After we got home I realized I could not lift my top of my foot.. My leg was numb.. but had been for a while.. like it was asleep.. had been tingly for a long time but it was worse then..

I went to my Dr. a week later because it did not improve and appeared to be getting worse.. I had an ultrasound to rule out a blood clot and x-rays.. everything looks good.. all my labs are great . No deficiencies..

About 2 months later.. today.. I have and appointment with a specialist.. my symptoms have gotten worse and is not in my left foot and leg.. I am not able to drive..

I'm on my way now to my Dr.. I will update after my appointment..

cajamihutch
on 10/21/20 11:38 am

Thank you for your reply! I am hoping for a good outcome for you. Keep us posted.

White Dove
on 10/19/20 8:41 pm

Sleeve surgery reduces the size of the stomach, but there is no malabsorption.

Real life begins where your comfort zone ends

cajamihutch
on 10/19/20 9:04 pm

Like I have already stated twice, I understand this is a shot in the dark. I also know that when you alter a major body part, it could have some unexpected repercussions. 80 percent of the stomach is cut out, so I would argue that in some people malabsorption could be a possibility. I completely understand that is is VERY unlikely that my brother's ALS is caused from the sleeve surgery, but he's dying...it can't get much worse than that, so what's the harm in investigating all leads?

tmg
on 10/30/20 7:45 am
VSG on 12/09/20

I can't speak to any connection but you may want to check out the forums on ALS (alsforums.com/community). There is a lot of good information and support to be had there. My mom passed away from ALS in 2017 and I found the site to be very helpful. There are people who believe that nutrition plays a role in slowing disease progression and there is a lot of specific nutrition guidance available (watch out for the snake oil). Maintaining nutrition and weight is important in ALS because eventually swallowing is effected and getting enough nutrition is an issue. A feeding tube can help with this - my mom had a feeding tube because her speech and swallowing was effected earlier. She was walking until the end. I'm so sorry for your family's hardship.

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