View Full Version : what to do when you lose your diagnosis???

10-04-2011, 08:55 PM
Hey guys,

I know I haven't been here a while, but things have been NUTS around here. Right now I'm staying with my mom and grandma while recovering from an emergency cholecystectomy (gallbladder removal). It's not too bad, but I still can't eat much and I'm losing a little weight, which is nice since I still had about 40 lbs left over from my awful bout of steroids 2 years ago. currently, I'm still in school. I will graduate with my masters in counseling and guidance next nov. 1 year!I'm also working on a thesis on alcohol use in college studnts. I"m so excited and ready to be don. My son is growing like crazy. He's 14 months now, and he's keeping me very busy. Walking and running everywhere and he never stops. It's so amazing. My husband is working had on his degree and research for his dissertation, and He'll be done in 2 years. We're so ready to be done.

2 weeks ago, i had to go to the dr for SEVERE abdominal pain. I had to be admitted to the hospital because they couldn't figure out what was wrong with me and wanted me to have enough pain medicine and to be safe. Finally, they ended up doing an ultrasound of my ENTIRE abdomen to find out that my gallbladder had so many stones that it was twice the size it was supposed to be. When the dr did the surgery, he had to cut an extra incision just to get the gallbladder out without it rupturing. It was crazy. WHile I'm not hurting as bad as I was, I'm still having a lot of pain. But the good news is, whn you have new and severe pain, your body won't let you feel the agonizing chronic pain nearly as much if at all. so there's a positive. :) about 2 weeks before the gallbladder problems, i found out I was pregnant, but 4 hrs later, I miscarried. We found out later it was because my vit d levels are so low. It was a blessing in disguise because if I hadn't been worried about possible complications from the miscarriage, I probably would have avoided the dr for the stomach pain. i was seriously worried i had an ectopic pregnancy because they are common in my family. While my husband and I would love to have another baby, we know my body isn't ready for one just yet, and we trust God to give us another childe when He is ready.

So, I can't really remember what was going on last time I posted. I think I was about to go to the new rheum. I went, and I hated it! I've been 3 times now and she's been awful everytime. She's completely convinced that I do NOT have lupus, from the moment I walked in the door and she said I was "too young to need a rheumatologist". She thinks that I have fibro and depression and nothing else is wrong. Last time we went, my husband demanded that she check my vit d levels. (he works in a research lab and evntually wants to do autoimmune research, but he knows a lot of the signs of vit d deficiency). SHe didn't want to, but he said if she didn't we'd be finding a new dr. she did the test and found out my vit d level was 5...normal is 70-100. SHe put me on a daily regimine of 2000 IU and a weekly regimine of 50,000 IU. I"m also taking calcium, but I don't remember the dosage right now and I don't feel up to getting up to look. It's 2 over the counter tabs a day, if that helps. Any way, She's still convinced that there's no possible way I could have lupus because I"m too young and even though I brought her old labs that said my tests were all positive or high and when she took them they were "borderline" I can't have lupus. I don't know what to do. I feel like someone stripped away part of my identity. I know we all try not to let lupus lead our lives and not make it represent who we are, but after 8 years of having this diagnosis and finally coming to grips with it, it hurts to have someone try to take it away, and I"m clinging to it as hard as I can. I'm not really sure what else to say right now. I was just feeling a little talkative, and everyone is asleep. I also wanted to give you guys an update. I hope this update finds you all doing very well. I'm sorry ive been away so long, but i haven't had consistent internet access, and i've been crazy busy. Thank you all for your support. :)

God Bless,

10-05-2011, 12:09 AM
welcome home amanda,
it is alright to not come here at times,

my thoughts about the rhuemy is simple, fire her and find a new one.
you pay this person money to treat you.
if they do not want to give you a proper treatment.......
find someone who will.

10-05-2011, 06:33 AM
I agree with Steve, fire her! What makes you stay? I had the same problem, my last rheumy diagnosed me two times and then looked at me right in my eyes and said "you DONT have lupus, I never said that" my hubby and I were like WTBLEEP! is this guy crazy, needless to say I moved on, you have to be your own advocate and who better than you to know what you're feeling. You should be able to feel comfortable with your doctor and know that he or she is doing ALL that they can to give you a proper diagnosis.

10-05-2011, 07:42 AM
I agree with the others. "Too young to have lupus" shows how limited her understanding it. Self-advocate and insist if it is not lupus, then she has to explain away all the reasons the others thought it was. Get a doctor who listens to you. I hope you feel better soon re: gall bladder. Enjoy every minute with your son..,mine is now 3 and time just flies! Take care and best wishes.

10-05-2011, 03:13 PM
Sounds like my rheumatologist. Why did we go from you have Lupus to you are not sick enough to have Lupus. I am looking for a new one too.

10-17-2011, 01:56 PM
ditto to the above post. Why are rheumy's so aggravating? They do like to diagnose Fibro for some reason. The problem with that is it doesn't cause as many symptoms as they like to blame on it. AAAAAAAAAAAAnoying!

10-17-2011, 02:11 PM
Hi Amanda,
It's good to hear from you again and to get the update. I'm glad that your little guy is doing well.
I agree with everyone else - fire that doc! I know that because of insurance, we often stay with one that we don't like. If that is the case, keep insisting that you get the meds that you need, whatever the dx is. Hopefully, when you and your hubby finish school and get great jobs, you can find a new doc.
My great one back in Texas said that I was borderline on a lot of things, too but that wasn't a reason not to treat it. She said that once you add up all of those borderline things, it was obvious that I'm in some major AI pain.
Take care, and keep checking in with us.

10-17-2011, 03:26 PM
Go to a new doctor. You should not have your diagnosis striped from you without good reason. She does not sound competent. You are more important than her ego, so go get a new one : )