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connection between sleeve surgery and motor neuron disease / ALS ?



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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.

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First of all, I am very sorry for your brother's diagnosis. I lost a close friend to ALS and it's an awful disease. I do not think there is any causation between his WLS and ALS, but I'm not a doctor.

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Wow, this is horrible.

Correlation is not causation. We humans tend to think that thing-a causes thing-b if they happen in apparent sequence. It's just not always so.

It's like vaccines and autism. Vaccines are given to kids around age 2-3. This age is when Autism usually presents, with or without vaccines. So some parents relate one to the other when they happen close together by chance.

This is what is going on. The VSG happened by chance a few months before the ALS symptoms began.

It doesn't make anything better, though.

My thoughts are with you and your brother. I really wish I had some form of hope to offer.

Tek

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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.

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I'd be interesting in seeing your source for 5% of WLS patients. Also, not all WLS patients are created equal. VSG would be least likely to have issues as all absorption mechanisms are in place. RNY/DS on the other hand, might make more sense.

I look forward to learning from your sources.

ETA: this looks interesting: https://n.neurology.org/content/37/2/196.short

Tek

Edited by The Greater Fool

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First, whenever we see some reference to "WLS patients" in either the general media or even the general medical media. it is (unless specificallyl stated to the contrary) invariably referring to the RNY gastric bypass, as that has been the most common, and most commonly studied, WLS procedure over the past 30-40 years. Even most doctors (non-bariatric) whom we may consult over time will often confuse the procedures, or lump them all together as "the bypass". Something to keep in mind in later years if some doc suggests that "I can't prescribe that for you because of your WLS..." Ask questions and verify if that really applies to you. The RNY imposes a number of limitations that don't apply to other procedures.

Aa few years ago we did discuss in our support group (in full HIPAA compliance) a patient of theirs who, after consults with many different types of doctors, had been diagnosed with ALS. As it turned out, after going back and consulting with the bariatric practice (as he had not done in years) it was found to be one of those nutritional problems that you mentioned.

This patient, in his 70's if not 80's by then, had a Duodenal Switch, which is more malabsorbing than an RNY, and also somewhat fussier when it comes to supplementing, nutrition and lab follow up. This guy had not done his labs in several years, so things had skewed out on him. Once they got his supplements and nutrition in order, he was fine. The lesson here was that it was (is) imperative, particularly with these malabsorbing procedures, to stay on top of lab follow ups, as weird things can happen. Given that the RNY is also malabsorbing to a somewhat lesser degree, but much more common, I would expect that the medical field would see some of these problems in a population that may be fairly casual about following up on their health. I could certainly buy that there is some association over time with some increase in some of these symptoms owing to odd nutritional problems

As to your brother with his sleeve, one of the reasons that many prefer the VSG is that there is no malabsorption, and is much more forgiving - less supplementing need, and hence less intensive follow up requirements -than the malabsorbing procedures. Further, the problem that the above patient had manifested itself over years of neglect, rather than a few months of normal WLS recovery, so I don't see that this is a likely situation for your brother; as above, it is likely simple coincidence. As with taking your car in for service and it breaks down a few days later - there is always a suspicion that they did something there - yet sometimes it is indeed simple coincidence.

It looks like you are doing all the right things as far as second (and third, fourth, etc.) opinions, and this is vital when we get into situations that are beyond the normal. Another possible consult may be Dr. Ara Keshishian, also in the LA area, who is long experienced with sleeves and the DS; he may have run across something like this if there is any real connection to find. He does a lot of distance consults for revisions, so if distance is a problem, an initial consult can usually be done by phone/email/skype.

All the hope in finding a good outcome,

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Out of curiosity, i googled "connection between WLS and neurological disorders". There's quite a lot of info and research articles on this topic and 90% of them relate RNY gastric bypass to neurological disorders due to malabsorption of Vitamin B (2, 6 and 12). I didn't come across any correlation between VSG gastric sleeve and neurological disorders.

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1 hour ago, RickM said:

First, whenever we see some reference to "WLS patients" in either the general media or even the general medical media. it is (unless specificallyl stated to the contrary) invariably referring to the RNY gastric bypass, as that has been the most common, and most commonly studied, WLS procedure over the past 30-40 years. Even most doctors (non-bariatric) whom we may consult over time will often confuse the procedures, or lump them all together as "the bypass". Something to keep in mind in later years if some doc suggests that "I can't prescribe that for you because of your WLS..." Ask questions and verify if that really applies to you. The RNY imposes a number of limitations that don't apply to other procedures.

Aa few years ago we did discuss in our support group (in full HIPAA compliance) a patient of theirs who, after consults with many different types of doctors, had been diagnosed with ALS. As it turned out, after going back and consulting with the bariatric practice (as he had not done in years) it was found to be one of those nutritional problems that you mentioned.

This patient, in his 70's if not 80's by then, had a Duodenal Switch, which is more malabsorbing than an RNY, and also somewhat fussier when it comes to supplementing, nutrition and lab follow up. This guy had not done his labs in several years, so things had skewed out on him. Once they got his supplements and nutrition in order, he was fine. The lesson here was that it was (is) imperative, particularly with these malabsorbing procedures, to stay on top of lab follow ups, as weird things can happen. Given that the RNY is also malabsorbing to a somewhat lesser degree, but much more common, I would expect that the medical field would see some of these problems in a population that may be fairly casual about following up on their health. I could certainly buy that there is some association over time with some increase in some of these symptoms owing to odd nutritional problems

As to your brother with his sleeve, one of the reasons that many prefer the VSG is that there is no malabsorption, and is much more forgiving - less supplementing need, and hence less intensive follow up requirements -than the malabsorbing procedures. Further, the problem that the above patient had manifested itself over years of neglect, rather than a few months of normal WLS recovery, so I don't see that this is a likely situation for your brother; as above, it is likely simple coincidence. As with taking your car in for service and it breaks down a few days later - there is always a suspicion that they did something there - yet sometimes it is indeed simple coincidence.

It looks like you are doing all the right things as far as second (and third, fourth, etc.) opinions, and this is vital when we get into situations that are beyond the normal. Another possible consult may be Dr. Ara Keshishian, also in the LA area, who is long experienced with sleeves and the DS; he may have run across something like this if there is any real connection to find. He does a lot of distance consults for revisions, so if distance is a problem, an initial consult can usually be done by phone/email/skype.

All the hope in finding a good outcome,

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.

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52 minutes ago, Bari_KS said:

Out of curiosity, i googled "connection between WLS and neurological disorders". There's quite a lot of info and research articles on this topic and 90% of them relate RNY gastric bypass to neurological disorders due to malabsorption of Vitamin B (2, 6 and 12). I didn't come across any correlation between VSG gastric sleeve and neurological disorders.

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.

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9 hours ago, The Greater Fool said:

I'd be interesting in seeing your source for 5% of WLS patients. Also, not all WLS patients are created equal. VSG would be least likely to have issues as all absorption mechanisms are in place. RNY/DS on the other hand, might make more sense.

I look forward to learning from your sources.

ETA: this looks interesting: https://n.neurology.org/content/37/2/196.short

Tek

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??

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I had RNY 2 years ago and have started having some neurological problems too.

Not being able to squeeze jars. Dragging feet etc.

I joined to reply to you because ALS of course has been on my mind.

I found a blog of a lady from Maine who had the sleeve and then was diagnosed with ALS a year perhaps 2 years after? I should note she does not feel her sleeve has anything to do with her diagnosis.

I didn't join her page because I don't want to panic myself yet but I believe it was called Tamurais adventure on Facebook.

Good luck on your search for info.

Edited by Rennata

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57 minutes ago, Rennata said:

I had RNY 2 years ago and have started having some neurological problems too.

Not being able to squeeze jars. Dragging feet etc.

I joined to reply to you because ALS of course has been on my mind.

I found a blog of a lady from Maine who had the sleeve and then was diagnosed with ALS a year perhaps 2 years after? I should note she does not feel her sleeve has anything to do with her diagnosis.

I didn't join her page because I don't want to panic myself yet but I believe it was called Tamurais adventure on Facebook.

Good luck on your search for info.

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!

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This is in response to the person whom posted the article, I hope your brother is doing ok and I would like to emphasize I am in no way saying you should attempt what I'm about to tell you however it was a shot in the dark as well and I was lucky enough to save my fiancee from a horrible fate......

My gf/fiancee had a duodenal switch surgery which was very successful inside of 2 years her weight stabize at 160 lbs down from 300lbs. Shortly after her target weight was obtained she started having severe depression with suicidal ideation when she had been a very happy person her entire life. After a 6 day stay in the psych ward she went back to work and soon after developed back pain sever enough to leave her screaming in pain at times she had muscle spasticity, difficulty swollowing breathing, peripheral numbness, muscle wasting in legs and arms.

I had to put hand rails in our home so she could get around. Incontinence and difficulty swollowing, breathing, and speaking came next.....after much reading and a near refusal to do any mris by the hospital that did surgery.(I suspected they feared a large lawsuit)

The reumatologist and neurologist we were referred to both said they suspected als. I became obsessed with finding a way to heal her save her from what was already horrifying illness. I had a lot of trouble sleeping because her breathing scared me and I just sat and read listening to her shallow strained breathing. I swear I read enough studies and articles to have completed medical school.

I accumulated almost 220 pages of hand written notes in 2 weeks time I came up with a plan there are many Vitamins and antioxidants said to be imbalanced in the brains of pals the problem is supplemented antioxidants take to long to get into the Central nervous system so once the imbalance is bad enough to cause motor neuron death its like a snow ball rolling down a hill getting bigger and bigger that can't be stopped by ingestion due too the blood brain barrier making absorption slow and difficult this is made harder by malabsorbative aspect of surgery. I needed to get large doses into the brain and fast. I have read many article how methamphetamine exposure in small amounts stimulates brain cell growth and protects against cns and brain diseases by causing a small amount of damage stimulateing a neuroprotective effect as well as making the blood brain barrier more permeable these are the supplements I used in order of imprtance. I am not a Dr. I have no medical training please don't think I'm saying I truly know why or how thos worked but it did all supplements taken 3x a day with a small smoked dose of approximately 50-100 mg of street grade methamphetamine.

N acetyl cysteine 600 mg

Alpha lipoic acid

Acetyl l carnitine

Curcumin with black pepper

Magnesium chileate

coq10

Vitamin e

Creatine

B vitamin complex (especially folic acid)

Egcg

Dhea

Tart cherry extract

Zinc pico lineate

As well as a gluten free diet and several other listed in linked article.

A full dose of bariatric vitamins 3x a day as well here is a link to a article written by a world renowned neurologist going over all these compounds how they could work and why as well as how they help

THE USE OF METHAMPHETAMINE TO FERRY LARGE AMOUNTS INTO THE BRAIN IS DANGEROUS......

It's been hard just getting her to take all supplements 3x a day caused conflict but slowly she got better now the only symptoms she has is occasional incontinence and a mild parkinsonism when she sleeps as well as mild spasticity. She is a bit slow but walks fine talks perfectly and breathing is normal as well as respiration normal and blood [pressure went up too normal range....

https://drcgolding.co.za/integrative-approach-motor-neuron-disease/

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On 2/20/2022 at 9:53 PM, Drs.R,assholes said:

This is in response to the person whom posted the article, I hope your brother is doing ok and I would like to emphasize I am in no way saying you should attempt what I'm about to tell you however it was a shot in the dark as well and I was lucky enough to save my fiancee from a horrible fate......

My gf/fiancee had a duodenal switch surgery which was very successful inside of 2 years her weight stabize at 160 lbs down from 300lbs. Shortly after her target weight was obtained she started having severe depression with suicidal ideation when she had been a very happy person her entire life. After a 6 day stay in the psych ward she went back to work and soon after developed back pain sever enough to leave her screaming in pain at times she had muscle spasticity, difficulty swollowing breathing, peripheral numbness, muscle wasting in legs and arms.

I had to put hand rails in our home so she could get around. Incontinence and difficulty swollowing, breathing, and speaking came next.....after much reading and a near refusal to do any mris by the hospital that did surgery.(I suspected they feared a large lawsuit)

The reumatologist and neurologist we were referred to both said they suspected als. I became obsessed with finding a way to heal her save her from what was already horrifying illness. I had a lot of trouble sleeping because her breathing scared me and I just sat and read listening to her shallow strained breathing. I swear I read enough studies and articles to have completed medical school.

I accumulated almost 220 pages of hand written notes in 2 weeks time I came up with a plan there are many Vitamins and antioxidants said to be imbalanced in the brains of pals the problem is supplemented antioxidants take to long to get into the Central nervous system so once the imbalance is bad enough to cause motor neuron death its like a snow ball rolling down a hill getting bigger and bigger that can't be stopped by ingestion due too the blood brain barrier making absorption slow and difficult this is made harder by malabsorbative aspect of surgery. I needed to get large doses into the brain and fast. I have read many article how methamphetamine exposure in small amounts stimulates brain cell growth and protects against cns and brain diseases by causing a small amount of damage stimulateing a neuroprotective effect as well as making the blood brain barrier more permeable these are the supplements I used in order of imprtance. I am not a Dr. I have no medical training please don't think I'm saying I truly know why or how thos worked but it did all supplements taken 3x a day with a small smoked dose of approximately 50-100 mg of street grade methamphetamine.

N acetyl cysteine 600 mg

Alpha lipoic acid

Acetyl l carnitine

Curcumin with black pepper

Magnesium chileate

coq10

Vitamin e

Creatine

B Vitamin complex (especially folic acid)

Egcg

Dhea

Tart cherry extract

Zinc pico lineate

As well as a gluten free diet and several other listed in linked article.

A full dose of bariatric Vitamins 3x a day as well here is a link to a article written by a world renowned neurologist going over all these compounds how they could work and why as well as how they help

THE USE OF METHAMPHETAMINE TO FERRY LARGE AMOUNTS INTO THE BRAIN IS DANGEROUS......

It's been hard just getting her to take all supplements 3x a day caused conflict but slowly she got better now the only symptoms she has is occasional incontinence and a mild parkinsonism when she sleeps as well as mild spasticity. She is a bit slow but walks fine talks perfectly and breathing is normal as well as respiration normal and blood [pressure went up too normal range....

https://drcgolding.co.za/integrative-approach-motor-neuron-disease/

WOWW! this is fascinating!!!!

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