Wow. I have not been back on here because of dr visits and such, kind of went off the rails a bit. Here are some things that were found.
Neuromuscular disease and wLS:
Dssurgery blog neuromuscular-disease-after-weight-loss-surgery
Looked up Creon, thinking it is used in DSers to slow the bowel. I have taken meds to slow the bowel and take pain meds that slow the system, leads to constipation.
Went to my Urologist, I am having stone issues. She says everyone is different, but the DS definitely makes us more prone to stones. Explained in detail why and how diet helps/hurts. I'm hurting now with a size 3 stone trying to pass.
Kuddos to the calcium citrate advice with meals.
Spoke with anyone and everyone that has an opinion. Pcp, DS doc, DS nurse, neurologist, urologist, nutritionist, friends, and hubby.
In the end, my hubby made the deciding vote.
1) even with all my labs that were checked in normal range, my neuro and urological issues started soon after losing my weight.
2) we have fought, spent thousands, and tried to figure out why I have so many neurological issues. Then to have the top specialist find COPPER is low, makes us wonder how long it has been low. How many of my issues are due to deficiencies? (People with normal guts get deficient, I know, but at least I will have more of a chance.)
3) we don't trust lab work any more. Something is wrong. They don't have the foggiest clue what they are looking for. We would be constantly checking and modifying. Fix one thing, break another.
We have tried to make everything work, and my whole world has gone in circles for the past several years.
I don't think I have rushed into this. I started asking questions last year. 2015 was my worst year.
This past month was just the last straw. Too many IV's, Tpn, shots, etc.
We are both tired. We have chosen to reverse it. Now, we pray it helps.
I promise to post what happens Monday.
Thank you ALL for your encouragement and advice.