Bad neurological symptoms please help!

ccarter7424
on 7/21/16 5:45 pm

Hi. I am 6 years from bypass and all of the sudden this past Monday, I began having a lot of tingling, twitches, electric shock like feelings in both legs from the knee down. I have been very very stupid to not have taken any supplements for the past three years. I know how stupid that is!!! So, got highest level B12 I could find and took it. Did nothing. So, after 5 days of those horrible symptoms (oh yes, and unbelievable fatigue and nauseous), went to primary care, told my symptoms and had to ask him to check B12 and D, he gave me a B12 injection and after waiting for 30 minutes afterward, drew blood. Next day got call from office that B12 was greater than 2000 but D was 8. Yes, 8! Said was very very low and gave RX for 50,000mg of D to take once a week and also take 1000 a day, bought over the counter. He did not check calcium or iron. Twitching and electric shock feelings are better, still some twitching just in both calves, but legs fee like cinder blocks, stiff, and I'm very worried. No weakness really, just heavy feeing and stiff. Anyone ever experienced anything like this? I know I'm an idiot for not taking all required supplements, but I don't know if this is electrolyte issue, iron issue, or what? My primary care does not seem to want to check EVERYTHING that we know should be checked, iron, iron saturation, ferritin, folate, calcium, binding aspect of calcium, etc. Anyone ever have this type of issue, twitching calves, fatigue, stiff heavy legs??? 

Bibo
on 7/21/16 11:16 pm, edited 7/21/16 4:17 pm

Call your Bypass doctor you also need to get your B1 checked ASAP and you need to see a neurologist.  I have been having these things going on also. You need to get ALL your bariatric labs and a thyroid work up. ASAP. They are probably going to fuss but this is your life.SOme of this stuff is not reversible. Some is. Call tomorrow. See what they say and message back here. There are some things that can be done. My experience was I was told to get a bariatric fusion MeAL REPLACEMENT shake and start using that...it has  a full vitamin in it...Cornerstone is also prescribed. This is in addition to the regular vitamins.  There are other prescription as well. Bariatric Fusion MEAL REPLACEMENT is on amazon without prescription. Good luck

    

ccarter7424
on 7/22/16 5:51 am

Thank you so much! I've called my surgeon's office and waiting on call back. If can't get in soon I'm going to have to go to ER. Now very nauseous, diarrhea (sorry for graphics) no appetite at all. I appreciate your reply.

Bibo
on 7/22/16 8:04 pm

The thing is to get as many vitamins back in.....I mean I am not a doctor but I have absorption issues to a medical condition and at first folks thought it was my bypass. My NUT was very good about guiding me that to ALWAYS get vitamins. The meal replacement shakes have a daily dose of vitamins in them and it doesn't hurt to get as many as possible when low. I was told to use dry vitamin D, and when my labs run low to take more...there is no high dose limit from what I have read...I take 5000 IU and my labs are barely level, so its a thing to be aware and regular docs don't always monitor. The B-12 can be high as heck in the blood stream-- I am ALWAYS high, like WAY over and I get those nerve things you talk about....it COULD be something else not related to vitamins. If you were diabetic before the surgery it is POSSIblE to still get neuropathy after the bypass.....depends on lots of other factors....I have been through it with many non bypass doctors related to this so it's good to get other specialist involved on your team....neurology will want to see you connected and working with a bypass doctor.

 

In terms of the vitamins ask your NUT there are prebiotics that can help absorb them easier...I take one that was recommended call NOW plant enzymes that i was told to get on the purity website, its not expensive. like 8.00 a month or so that I eat before my meal.....The heavy legs and stuff like that could be anything from an artery problem to a muscle problem so it's good that you are getting back on track with the vitamins and starting to build your support system. 

 

It's nice to know we are not alone. I can make my mistakes in twos....one is making the mistake, the next is beating myself up cause i  made the mistake, you know?  There are always solutions....some not as fun as others, but it sounds like you are on the right track. Stay in touch!

    

Debstamper
on 8/10/16 4:00 pm - CA

Hello!

Wow, this all sounds too familiar!  I have experienced these issues as well as many more, but let me address these.  My symptoms began at about 6 years out too.  I had the tingling, twitches, shock like feelings in my legs and hips and being very tired.  I kept thinking that a nerve was damaged during my surgery.  I also started tripping and falling down.  After several complaints to my primary doctor and having my vitamin levels checked (all ok on that front), I was referred to a neurologist.  The neurologist ordered an MRI of my entire body.  I was diagnosed with Cervical Stenosis of the spine.  I was told that spinal fluid was not flowing properly and needed surgery ASAP.  The surgeon was specific in saying that my condition would not improve, but would not get worse.  The surgery went fine and I do have to say the shock like feelings have gone away.  My tripping has improved. I still get the twitching and stiffness and now cramping in my legs.  I feel like the issue with us WLS patients, is that some of these symptoms cross over and it is difficult to diagnose, so doctors will treat each symptom.  Because I have had so many symptoms, I now can say I have has so many procedures and surgeries.  I had a hernia and had that surgery, luckily they were able to remove the excess skin at that time.  A hysterectomy because of fibroids that started off with the complaint of exhaustion and anemia.  Then the back surgery.  It is a difficult road, but I would do it again to be 150 pounds less!  I wish you luck and freedom of pain. 

 

Deborah

Deborah Nunez
(deactivated member)
on 8/14/16 7:09 pm - east falmouth, MA

I have almost exactly the same issues 8 years out.... I have begun transdermal supplements and it's such a struggle.  I find magnesium and b12 are pretty well absorbed this way .. cant seem to get D over 8 no matter what I do orally even with the prescription levels.   Some days i just cant hardly even move.   

With this knowledge I wish i had been more selective and maybe waited to get the sleeve surgery.  The malabsorbtion from the bypass is probably making me need a lot more vitamins if orally is how i take them.... never seem to be well. 

One thing that helps me that i can do is sal****er swims at the beach.  Fortunately I can do it in the summer here after I work.  The minerals seem to absorb and relax the twitching.  

I have consulted a naturaopath and we are working on ways to improve the absorption but its a big science project and going to take some time.  Not at all convinced I caused this because i have been loyal about supplementation over the years.  i seriously believe the bypass is the reason for my deficiencies although it is also my saving surgery. 

In retrospect I wish i had the chance to have the sleeve instead.  It wasn't even approved then but my Husband had his done 5 years ago and is a much worse eater than i and has no deficiencies .   His vitamins work orally, mine dont seem to... 

that said, good luck and try some transdermals  ( i got mine on amazon from a place in texas)   

chevtow41
on 8/15/16 11:14 am
DS on 11/11/14

Go to amazon and search for Biotech D3 50k unit. Start taking one a day. Docs prescribe those 50k a week crap vites which just doesn't bring up the numbers very quickly, probably because you still malabsorb at least some fat - prescription D is oil based (fat basically).

Transfiguration
on 1/22/17 6:54 pm - Somewhere in time, SC

You are NOT an idiot! I have send me to feel that I was crazy because my neurologist and other doctors could not find a cause for my chronic  nightly leg twitching.  I've had sleep labs done and nothing explains it. I have tried increasing my vitamin intake. Currently my neurologist prescribe when I go to bed to relax my muscles. I have the Iron patches that  really help. I read somewhere that switching is a sign of iron deficiency. I hope things work out for you keep us posted.

Keep on climbing, Till I reach the higher ground

            
islandgirl55
on 2/14/17 7:37 am

Calcium!!!! Start your calcium supplements quickly. It made a huge difference with my muscle issues. 

 

 

RNY revision to Lap DS  Feb, 2016, Dr. Ayoola. 

HW 235/SW 184/CW 127

Beam me up Scottie
on 2/14/17 3:04 pm
You need Dry D and more than 50,000 1 time per week.

You can buy the stuff on Amazon:

https://www.amazon.com/Bio-Tech-D3-50-000-100-caps/dp/B000A0F2B2/ref=sr_1_1_a_it?ie=UTF8&qid=1487113341&sr=8-1&keywordsry+d+50%2C000


It will be absorbed much better. I take 150,000 IUs per day (I HAVE THE DS- so don't do that), but you may need to take it more (talk to your doctor) than just 1 time per wee****il your levels come up.


You need a full set of labs. Everything should be checked at least once per year- but sometimes even twice if you are having issues.


Scott

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