newly diagnosed but questioning doctors

  I am over 9 years post op and for the past year+ I have had numerous health issues... since my surgery in April 2003 I have lost over 100 pounds, The last couple years have been up and down but I have maintained about 180 until this year. (my pre op weight was 304) Since my surgery I have been taking vitamins, including b12 and iron, but back in 2006 I had to start the b12 inj, because I was severely low( dr said normal was 200 - 900 mine was 5****il this past year I thought everything was ok and then I ended up in the hospital with very high liver function enzymes. I also started having a long list of odd symptoms and was referred to several different specialist who suspected MS or Lupus as well as several different liver diseases and after being sent to Wake Forest Hospital (more than 2 hours from my home) the doctor their was with me and my husband for more than an hour and after going over all my other test results and history the doctor determined I had severe b12 deficiency, My blood level seemed normal but other test showed I had very low stored in my body and it had been that way for a number of years. I have undergone numerous test and have been out of work since Jan this year and have been told I have nerve damage from the lack of b12 store. I have seen 2 different Rheumatologist and both have diagnosed me with Fibro and just last week the doctors have determined I am severely anemic and will most likely have to start infusions later this month, once again my iron level was on the low side of normal but my ferritin was 6. The hematologist said 30 is low and ideally he would like it to be over 100. I am like you with the FM diagnosis because a lack of b12 and anemia has a wide variety of symptoms that can mimic FM. I have been told they cannot reverse the nerve damage but at this point they can stop it from progressing but I will have the symptoms from that for the rest of my life. Needless to say I am very upset with all that has happened in the past year but at least I know it is not MS or some other disease. What I have been going through has already altered my life. from the pain to the severe memory problems and mood swings as well as muscle control problems that have affected my bowel and bladder. I blame myself for not researching things better before and soon after my surgery, but I also blame my surgeon, after my 6 month post op they did not schedule a follow up and said to call as I needed. Well I didn't call or go back for over 2 years and then the doctor wanted to blame me and after a mess I just quit seeing him. I am now seeing a wonderful Gastro Dr in Charlotte and would never think of seeing anyone else. I am thankful for my family and friends during all this but I am most thankful to my Lord and Savior, for with out Him I am sure I would already be dead considering the seriousness of what I have went through. Please continue to follow up and seek additional medical support if you continue to have problems. I cannot go back and change what I should have done but I want to voice my thoughts and opinion so others will not have to go through what I have. 

I am sorry to have written you my post op condensed version. I hope I have said something to encourage you.

Thanks so much for sharing with us and I'm sorry you are having to go thru all this. Hopefully this will spur others to be extra careful with post op follow ups especially those with the malaborbtive surgeries. I agree that with out my faith in our Savior I''d be a blithering idiot but He gets me thru each day. Most of us with fibro have to deal with the constant pain of achy muscles, like a flu that never goes away so whether you have fibro or not you are welcome here. Dealing with constant pain is an ordeal no one can understand unless they've been thru it. Feel free to join us here and check out the Christianity forum in my siggy line.

Tamara I'm so excited that I found someone who has my symptoms!  I went to the rheumatologist yesterday and he took eleven vials of blood.  At this point, he isn't sure what is causing my body pain and my muscle weakness.  He says he doesn't think it's FM because my pain comes on within four hours after I wake up or either after I work really hard.  The pain is debilitating and now my leg muscles feel like jello most of the time. 
The doc has put me on Tramadol for pain, Meloxicam as an anti-inflammatory and now has me on Neutontin.  I hate taking prescribed meds but I have to admit that the pain is lessened with them.  I just hate feeling loopy. 
I kind of felt like my symptoms could be from my RNY eleven years ago but wasn't for sure.  When I go back to his office in two weeks, I will ask him to test my B12 levels and iron levels. 

Have you ever had pain radiate from your chest into your arms after eating heavy fats or sugars?  That's where my pain started years ago and now has graduated all over my body.

I'd love to hear from you and any more details of your condition.  Feel free to email me as I would get it quicker that way. 

What are you taking for nerve damage now and is it helping?

At least we are in this together girl!

God is taking care of us so don't lose faith ok?

Hugs,

Robin