Greetings Everyone,
Thank you to whomever takes the time to read and answer questions.
Im in need of some help. I was diagnosed November of 2015 with MS.They had found in an MRI that the Myelin sheaths in my lower cervical spine had been eaten away after a car accident earlier that year. I also had a brain MRI and it showed lesions that were about 5 years old. I was undergoing a very much needed surgery when I was diagnosed and was told many different things at the time. When I was 21 I had a Weight loss surgery called a biliopancreatic diversion duodenal switch. It was an experimental surgery that they were trying in the early 2000s that would help with weight loss. The surgery was a success but it came with numerous complications. too many to list. When I got diagnosed with MS. The surgeon who was taking care of my internal hernia stated that he did not think I had MS. Due to the fact that before the accident in 2016 I had never had any symptoms and that I have had a mal absorptive surgery and my body is gonna do whatever it needs to survive including eating itself. That my body was attacking itself to stay alive. I have since taken care of the hernia but noticing lately that the numbness in my right fingers is still there. The whole right side of my body is starting to feel extremely heavy and weak. Shots of pain do run throughout my body at all different times of day. At this point I am scared and not sure where to go. They gave me medicine called copaxone to help delay the symptoms if they started. I have yet to start taking it due to the fact that I am one to not put anything in my body if I don't have to. Im getting scared and overwhelmed. Im a performer and my job has also done some very damaging things in the last couple of years that may attribute to it as well. Any help would be soo appreciated. Im coming to terms with the fact that I just may have MS but its becoming more and more overwhelming to accept.
HAs anyone heard any of the same thing?
Thank you to all who have listened.
Hello!
Re: Hello!
i always look to rule out malnutrition as a contributor to any chronic health issues, including MS. looks like it could be part of the picture in your particular scenario also.
Rare surgery brings more weight loss, more risks
http://www.reuters.com/article/us-surge ... YR20110906
"Of the 29 duodenal switch patients, 62 percent had problems like abdominal pain, vomiting, diarrhea and intestinal obstruction. And several suffered long-term malnutrition -- something not seen in the gastric bypass group."
Duodenal Switch Risks and Complications
https://www.dsfacts.com/duodenal-switch ... ations.php
"Malnutrition is an uncommon and preventable risk after Duodenal Switch. [2] DS patients must be committed to taking vitamin and mineral supplements, consuming a high protein diet and having their blood tested each year. Deficiencies in vitamin D, vitamin A, calcium and protein can result in osteoporosis and anemia. Blood-work must be monitored and the adjustment of supplements as necessary."
vitamin D, vitamin A and protein issues can be a factor in MS as well, so looks like some crossover
what's your current strategy for meeting all essential nutrient requirements and monitoring your status?
Rare surgery brings more weight loss, more risks
http://www.reuters.com/article/us-surge ... YR20110906
"Of the 29 duodenal switch patients, 62 percent had problems like abdominal pain, vomiting, diarrhea and intestinal obstruction. And several suffered long-term malnutrition -- something not seen in the gastric bypass group."
Duodenal Switch Risks and Complications
https://www.dsfacts.com/duodenal-switch ... ations.php
"Malnutrition is an uncommon and preventable risk after Duodenal Switch. [2] DS patients must be committed to taking vitamin and mineral supplements, consuming a high protein diet and having their blood tested each year. Deficiencies in vitamin D, vitamin A, calcium and protein can result in osteoporosis and anemia. Blood-work must be monitored and the adjustment of supplements as necessary."
vitamin D, vitamin A and protein issues can be a factor in MS as well, so looks like some crossover
what's your current strategy for meeting all essential nutrient requirements and monitoring your status?
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Re: Hello!
Hello Jimmy Legs!
Thank you for your response.
The doctor that performed my surgery is one of the surgeons listed on that page about the Duodenal Switch.
Unfortunately, I was not very disciplined when it came to Vitamins. I had the surgery in 2001 and I JUST started taking the vitamins that my body has required in 2016 after my hernia replacement. I was only told of one vitamin to take in all those years and that was a prenatal vitamin. That was after 2 live births and a lot of other life altering decisions. I came to realize that there were a SLEW of vitamins I should have been taking for over a decade and was not. So I just began in 2016 to take the necessary vitamins my body has needed for quite some time.
I had 15 years of severe abdominal pain and anemia. I have been uninsured for most of the time throughout the years and was only able to get medical insurance in 2015. Suffering from severe abdominal pain and hundreds of trips to the ER and their diagnosis would be to tell me I was crazy. All to find out I had an internal hernia the length of my small intestine growing larger and longer every year until I had about 2 inches of intestine still intact. So to say my journey has been a little on the difficult side is fair. Now I live a very healthy lifestyle and follow a very strict plan. Not as much protein as I would like but that is a work in progress. But all the symptoms that are coming on are quite scary and paralyzing me with fear. I am usually a fighter if you were to ask anyone who knows me that would be the first thing they say about me. But this one is kinda taking me for a loop.
THANK YOU SO MUCH FOR YOUR RESPONSE. IT MEANS THE WORLD TO ME. I feel heard and that is such a feeling of comfort in this very dark place that I am right now.
Thank you for your response.
The doctor that performed my surgery is one of the surgeons listed on that page about the Duodenal Switch.
Unfortunately, I was not very disciplined when it came to Vitamins. I had the surgery in 2001 and I JUST started taking the vitamins that my body has required in 2016 after my hernia replacement. I was only told of one vitamin to take in all those years and that was a prenatal vitamin. That was after 2 live births and a lot of other life altering decisions. I came to realize that there were a SLEW of vitamins I should have been taking for over a decade and was not. So I just began in 2016 to take the necessary vitamins my body has needed for quite some time.
I had 15 years of severe abdominal pain and anemia. I have been uninsured for most of the time throughout the years and was only able to get medical insurance in 2015. Suffering from severe abdominal pain and hundreds of trips to the ER and their diagnosis would be to tell me I was crazy. All to find out I had an internal hernia the length of my small intestine growing larger and longer every year until I had about 2 inches of intestine still intact. So to say my journey has been a little on the difficult side is fair. Now I live a very healthy lifestyle and follow a very strict plan. Not as much protein as I would like but that is a work in progress. But all the symptoms that are coming on are quite scary and paralyzing me with fear. I am usually a fighter if you were to ask anyone who knows me that would be the first thing they say about me. But this one is kinda taking me for a loop.
THANK YOU SO MUCH FOR YOUR RESPONSE. IT MEANS THE WORLD TO ME. I feel heard and that is such a feeling of comfort in this very dark place that I am right now.
Re: Hello!
no problem 
your timeline interests me. in my case it was 15 years of bad diet before i started to get neurological symptoms. at the time i made drastic and sweeping changes to my diet including loads of supplements. i told myself that i had been 15 years getting into this state of affairs and could expect a 15 year journey to get back to where i started. luckily most of my major improvements happened much sooner that that! i'm 11 years in now and figure this is about as good as it's gonna get. unfortunately, some of my symptoms were ultimately irreversible.
very glad to hear the docs figure out what was causing your pain after all this time, and that you are back on track with your nutrition. one thing i'll suggest is that normal vitamins are for health maintenance. if you've been gradually depleted for over a decade, you might need more of a therapeutic boost approach, to get things back in line. a few blood tests might be an idea, if you have access!

your timeline interests me. in my case it was 15 years of bad diet before i started to get neurological symptoms. at the time i made drastic and sweeping changes to my diet including loads of supplements. i told myself that i had been 15 years getting into this state of affairs and could expect a 15 year journey to get back to where i started. luckily most of my major improvements happened much sooner that that! i'm 11 years in now and figure this is about as good as it's gonna get. unfortunately, some of my symptoms were ultimately irreversible.
very glad to hear the docs figure out what was causing your pain after all this time, and that you are back on track with your nutrition. one thing i'll suggest is that normal vitamins are for health maintenance. if you've been gradually depleted for over a decade, you might need more of a therapeutic boost approach, to get things back in line. a few blood tests might be an idea, if you have access!
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use the report button to flag problematic post content to volunteer moderators' attention.
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Re: Hello!
Hello again.
Thank you for all your responses they mean the world to me. I have been in a dark cloud this week as this is becoming more and more of a reality. What are your symptoms now? how have they effected your lifestyle? your way of life?
I do now have a doctor that can help me get back on track and I also see an acupuncturist that is wonderful. I will be making an appointment with my PCP tomorrow to see if I can get prescription grade vitamins and Im going to get a my blood test tomorrow. Im just overwhelmed with all of this. For a while they were telling me that I did not have it. But as time goes on it just seems to be that I might.
Blessings to you!
Thank you for all your responses they mean the world to me. I have been in a dark cloud this week as this is becoming more and more of a reality. What are your symptoms now? how have they effected your lifestyle? your way of life?
I do now have a doctor that can help me get back on track and I also see an acupuncturist that is wonderful. I will be making an appointment with my PCP tomorrow to see if I can get prescription grade vitamins and Im going to get a my blood test tomorrow. Im just overwhelmed with all of this. For a while they were telling me that I did not have it. But as time goes on it just seems to be that I might.
Blessings to you!
Re: Hello!
mostly what i experience day to day is not central stuff but peripheral neuropathy. standard 'stocking and glove' stuff. at first was just feet and reversible. i didn't understand that i was playing with fire. one day my outer fingers went numb then a couple days later inner fingers too, and that was that. still like that to this day. except they felt a lot more annoying back then. now it's just 'not quite normal'. can't detect fine textures as well. diminished vibration sense. for the spinal cord stuff, if i exert myself too hard and my core temp goes up, i'll start to get really clumsy. and i rely on sight for big chunk of my balance. we were working in not weather, rough conditions underfoot and waist high grass last week and i fell over twice in a few mins before i took a break and waited til we had easier footing.
re vitamins when i was just learning, i always used to get extra potent ones designed for active ppl, to get a better shot at achieving or exceeding daily minimum requirements.
re bloodwork there are a few non-standard tests that if you can have them done, will help you learn whether your nutrient status matches an ms patient's profile, or that of a healthy person. personally i like to make sure my blood nutrient levels match a healthy person's!
re vitamins when i was just learning, i always used to get extra potent ones designed for active ppl, to get a better shot at achieving or exceeding daily minimum requirements.
re bloodwork there are a few non-standard tests that if you can have them done, will help you learn whether your nutrient status matches an ms patient's profile, or that of a healthy person. personally i like to make sure my blood nutrient levels match a healthy person's!
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
use the report button to flag problematic post content to volunteer moderators' attention.