Frustrated by new rheumie
i am new to this site. I was diagnosed with lupus 20 years ago. I was diagnosed with fibro 10 years ago. I also have diabetes and sleep apnea. My lupus has been in remission for 8 years until recently, having only mild flares. I have managed to work, though I have missed more work than I have been at work. I am finally giving up and filing for disability. My one problem is that my new rheumatologist (actually all I every get to see is the NP) has run all the blood work and it keeps coming back negative. I have symptoms galore though. I know by now what a lupus flare is and this is a bad one. I don't understand why the bloodwork is all negative. The NP put me back on methotrexate today....because I can't remember the dose I used to take she gave me 5 mg one time a week. I may be foggy buy I do know I took a whole lot more than that before. I think I need to find a real rheumatologist who will look past the blood work. Any suggestions from anyone? I am also filing for disability and am concerned the blood work will deny me. Any one have any knowledge on this?
I was just about to start a thread with the very same subject line!
I had a rotten rheumy in Texas, and then I found a real gem. She dx'd me with MCTD (mixed connective tissue disease) and started me on 200 mg of Plaquinel daily and 5 ml (injected) of MTX once a week. She mentioned that she would work with me on adjusting those doses as we went along. She also stressed that I needed to come in frequently for blood work while I was on MTX. She has a lab in her office, and I popped in every 6 weeks for a quick blood draw.
Soon after that, we moved to California. My new rheumy doesn't seem to want to accept the dx, since my bloodwork was "fine". Duh - I'm thinking that's because the meds are working! She only gives me an appointment and lab request once every six months. I had an appointment a few weeks ago, and she wouldn't even share my cholesterol number with me - she just said that it's "perfect". That makes me angry, since my "good" rheumy always gave me my own copy of my lab reports.
She hasn't changed my dosages since I started seeing her a year ago. From what I've read on this site, I ought to be taking more Plaquenil. I wonder if my former doc had planned to keep me on MTX this long and if so, should that dose be more by now? My current rheumy seems to think that the status quo is fine. She hurried me out the door without even giving me any paperwork for a lab request for the next appointment. I'm considering switching to a rheumy in San Francisco. It's 100 miles away, but I think that I might get better care!
Here's the kicker for me. Today, I received a call on my cell from my doc's NP back in San Antonio. She hadn't paid attention when she was calling down her list and called me accidentally. She was calling everyone who had received artificial synovial fluid injections, wanting to know if we felt that we might need more before the end of the insurance year. That doc had found that I had no fluid on my knee and a lingering infection after a knee surgery that the surgeon hadn't bothered to treat. She treated me with an antibiotic injection into that knee and a series of 5 artificial fluid injections, which made a world of difference! The NP was glad to hear that my knee was no longer giving me issues today. That entire office seems to be full of caring people!
If your doc's NP is good, perhaps she will tell you whether she thinks that the doc will slowly increase the dose of MTX. I think that it is one of those meds that has to be increased gradually. Ask lots of questions, and if they don't answer them, move on to another rheumy.
I could have written this post myself except that I can't get a diagnosis because my blood work is "fine". I have all the symptoms (even neurological ones) and I do take 400 mg of plaq. daily and 5mg of pred. (along with 9 other meds) daily which I KNOW is one of the reasons why my labs are coming back better. Sounds like I need to be in San Antonio instead of Houston. I could go to Marla's great doc!
Success is not final, failure is not fatal: it is the courage to continue that counts.
The Following User Says Thank You to tgal For This Useful Post:
Well i'm in the same boat as yourself, blood tests after blood tests, i've got a written letter to my GP saying i'm born with it plus the 4 they've diagnosed me with below and endless symtems since birth and they won't give me the results of my other blood tests but they're quick of giving me a steroid jab if i wanted it to calm the inflamed joints down and then i'm told you don't realy want to know if you have Lupus of the rehumetologist's client who he works with.
I think it's disgusting how we're treated, if they had it themselves it would be a different matter but i do wish you all the best.
Hi tgal, after reading this today and being more alert with myself as half the time i'm drugged up as you know, if i get no where in January with the specialist even with my hubby with me because he wants answers now.
Originally Posted by tgal
My neurologist can start pulling her finger out and start doing the tests instead because i've been with her for years and she does'nt mess about where bloods are concerned with my history i carry.
Thanks mate for mentioning neurologist, you proberly have before but i'm all over the show with this lot and ain't coping to good now the symtems are getting stronger.
Luv Terri xxx
I was kind of wondering about this myself, you guys all seem to know all your numbers. I like my rheum real well but he never gives me any numbers. He just says your sed is way to high or your ada is this, liver enzymes could be better that kind of thing. My dad had liver disease and every time he goes to the doc he gets a printout of all his tests in the mail a week later. I have never seen my labs unless it was an er trip and honestly I think that is because I know more about my condition than my er docs. Do they have to give us our results if we ask for them? Of course then you run the chance of getting them pissy, already went through that with a bad primary care doc.
Originally Posted by xani's mom
If you've got a good GP who works with you great like mine does, he had his receptionist get onto the specialist's department and asked for my first set of blood results to be faxed through on that day and at the same time they faxed through the letter from the specialist to my GP which he gave me a copy of straight away.
The only trouble is different area's and country's have different ways of doing things.
they have to give them to you. It is your medical record. Ask for it. It is important for you to know your numbers always! best to you.
This seems to be a common thing lately. When I was first diagnosed 20 years ago I don't remember having such horrible care. I am definately considering finding another rheumie. Shouldn't be too hard in Colorado Springs or Denver. Good luck to you. Take the drive to San Antonio...it could save your life!
It sounds like you were so fortunate to have a wonderful doc in San Antonio. I hope that you have better luck in CA. I can't understand why the dr would not give you your blood results! Those are yours! I would definately search another. Even if it is a little far, it is worth it for your life. I used to drive 200 miles from my hometown to see my rheumie just because he was AWESOME. unfortunately I am 2000 miles away now so that is out of the question.