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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.
I am a little over 6 years out and it was like being reborn. I had minor complications right after the surgery so my hospital stay was extended by a few days but not even during the first 24 hrs of pure misery did I regret it for a second. I still thank God every day for giving me a second chance.
My advice to you would be:
Start on a fitness plan as soon as you are able. Make it a part of your day, no excuses.
Do not snack. At all. I started off with a "sensible" snack (tangerine, etc) mid-morning and it slowly devolved into permission to eat randomly. If I could undo that, I would. Stopping that habit has been an unbelievable challenge.
Get in the best physical shape possible. I'm 60 and I still start my day with 250 sit-ups and do push-ups until I basically collapse. Having a six-pack (and all the other muscles I built up too) under all that loose skin helped me sail right through all the cosmetic surgeries I had later. I bounced back from each surgery like I was a rubber ball. Feeling fit and strong is like no other feeling you will ever have. You will never regret being fit. I hear excuse after excuse from so many people (my knees, my ankle, my back ...), well I have arthritis, scoliosis, degenerated discs, blah blah blah blah and if I can do it, so can you. Even Steven Hawking managed to blow into a straw so please do not ever list your excuses on why you "can't" exercise in front of me, lol. Go to a professional and get on a plan that works with whatever limitations you have.
Weigh yourself every day. It will keep you in check. A lot of people have criticized me for that but while their weight slowly creeps back up, I keep mine in check. Scales are not a bad thing. They are an instrument of measure, like the gas gauge on your car. Of course some days you will be up or down a couple of pounds but what you need to look out for is a trajectory; not OMG I weigh 5 more ounces than I did yesterday! If you weight 5 more ounces than you did the day before day after day, then you need to make adjustments in your eating.
Veggies are your new best friend. Bread is no longer your friend.
Find a hobby to do instead of food when you are bored or stressed. I decided to plant a garden, put up a ton of bird feeders and started identifying birds and taking photos of them It sounds dull, but it's turned into a lot of fun. Don't let a hobby choose you because if you were addicted to food, you can easily become addicted to something else in its place. Shopping, gambling, alcohol, bad relationships ... Choose something constructive and go have fun with it.
Don't stress how quickly you are or aren't losing weight. Just do what you are supposed to and it will happen. I was a slow loser while other people were basically melting like snowmen in July in front of me. Sometimes I felt bad and even a little envious, but I got where I needed to go just the same. Stay in your lane and work on you.
Some people are going to treat you differently and not in a good way. I'm female and have a female boss. The new and improved me set her off. I was getting loads of positive and encouraging attention. She became enraged at me constantly and her jealousy knew no bounds. One day at lunch (years ago) I bought a pair of size 10 jeans and was so proud of myself I wanted to cry. I was showing a coworker, was obviously elated and my boss walked by and said "Those are the biggest size 10 jeans I have ever seen" and scoffed. FU. The tide has really turned now, I'm a 0/2, she's a 20 and getting bigger by the day.
99% of people are going to be happy for you and want you to succeed, even if they voice concern about how little you eat, how much you have lost, whatever. You are looking and behaving radically different from what they are used to. Don't read malice into every comment. The people *****ally want to sabotage you will be evident enough and you will probably have to leave some relationships behind. That's ok. You'll form new ones.
Be a positive example. You never know if, how or when you are going to be the encouragement someone else needs to see in order to make a radical change. I show people photos of how big I was and they think I'm lying. That can't be you! Well, it was. If I did it, so can you.
Save one outfit from when you were your heaviest. It will be a reminder of how far you have come and tangible proof of what you accomplished. Every year on my surgiversary I take out my outfit and realize how blessed I am. I'd be dead by now if I didn't have the surgery. I buried my older sister, who did not have the surgery, almost 3 years ago.
While you are losing, buy yourself a cute top every 2 or 3 weeks. You don't need to spend a lot. It lifts your spirits to have something that fits, is colorful and looks pretty. It will make you feel a whole lot better. Swimming in all your old clothes does nothing for your self-esteem and it will be a while before you get to your goal and have to replace everything.
I could go on and on so if you have any specific questions, just ask.
It mostly depends on you. I know people who had VSG or RNY. Some lost all the excess weight and maintain, others lost all the excess, regained some, lost that regain again, and so on. And I know a number of people who lost 60-70 lbs only, never got to their goal weight, and then started regaining, gaining back all they lost, and then added some more lbs.
As someone else said, it depends on you. Your age, health, and overall body structure. And your dedication. Some people rather have freedom to eat almost anything, than to be skinny. Some set up their realistic weight-size that they can maintain without starving themselves, or get extreme exercise. Others believe that "nothing taste as good as being thin feels", and they work really hard on maintaining weight loss, and stay skinny.
At one time I got too thin for me. I have a large frame plus muscles and when I got to my "ideal BMI weight" I felt horrible. I looked great in clothes but not so nice without them (practically transparent skin, some muscles and bones).
Eventually I was able to gain some weight. if you ask me, bit too much. I planned to gain 10-15, but once I started gaining, I gained additional 15 lbs. And honestly - since my weight is stable now, and I can enjoy larger variety of foods (even pasta, ice cream, chocolate), I don't really care if lose the extra 15 lbs or not. When I was at my thinnest - I had too eat regardless if I wanted or not. Now I can eat a meal, or skip if I am not hungry.
Good luck.
Hala. RNY 5/14/2008; Happy At Goal =HAG
"I can eat or do anything I want to - as long as I am willing to deal with the consequences"
"Failure is not falling down, It is not getting up once you fell... So pick yourself up, dust yourself off, and start all over again...."
That is how I was and I kept waiting for the other shoe to drop, but things just got better every day.
Real life begins where your comfort zone ends
Just gathering information for reading while I'm recuperating from surgery a few more days!
KimmyJJ
White Dove, these feelings are the best and most positive I've had in a few years. I would get so down on myself for failing at dieting and it felt like a vicious cycle of depression and food and nothing ever went well. I am really feeling confident that I can do this!
KimmyJJ
TheWombat, I'll take all the luck I can get, thanks very much! This was a big step for me, but I'm feeling supported and have a bright outlook and I think this is going to really change a lot of things for me.
KimmyJJ
stacyrg, thanks for the well wishes. Things went very well, I barely felt any nausea from being put under, and just a bit uncomfortable, nothing major. They got me up to walk right away and I did ok by them on all counts so they cut me loose! I'm home now and feeling pretty excited about this new life.
KimmyJJ
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.
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.