Had my 2nd rheumy appt. yesterday, was a bit disappointing, she spent about twenty minutes with me after i drove over 2 hours one way and spent around 150.00 on food, gas, and co-pays. This is her first job, just out of school i guess is what i mean and she is also a genetic researcher for the clinic. I think she is a strictly by the book doctor, she is very intelligent and i am sure she is doing what is in my best interest but im a little let down today. I did take my notes and she didnt look to happy about that but i read to her my new symptoms since i had last seen her, she kept interrupting me asking questions, that is not good because when i am anxious and hurting i completely go blank and of course i did. i felt like she was shooting me down each time i told her something. example, i told her i was getting rashes, that i had had sinus infections and upper respiratory infections, that i had gotten very sick after being in the sun, ect. ect. She basically said these could be the causes of other conditions besides lupus and that since my bloodwork had been so wishy-washy since last year that just because i was having all these symptoms does not mean i have lupus. She is the one who told me i had "borderline lupus" at my first appointment in november, anyway, she did more blood work and said she would call when it came in so i guess we will wait and see, i dont want to have lupus, i dont want anyone to have lupus i just want to know what is wrong with me !!!! btw she did do a psychical exam real quick and said i had fibromyalgia severe case
oh and i failed to mention that i asked her if she felt like if i did have lupus could that be the reason for my sudden and extreme weight gain and she said no that most people with lupus loose weight and CANT put weight on because there is so much inflammation that ones body looses weight, i cannot remember her exact wording because it kinda shocked me, she also made mention that she did not think i had inflammation because she saw no redness or swelling, well no, she probably didnt yesterday and why would my crp levels (inflammation markers) be so high as well as my liver enzymes be so high and has continued to be for close to a year now and they have me on meloxicam, hello, am i missing something here, please advise
As far as the weight issue is involved, I think what she said is a load of ....
I have PCOS and all I do is gain weight. Not to mention every time I have a round of steroids, here comes even more weight.
I've had no redness or swelling, but when my SED rate is taken, it's been high. I can always tell when my SED rate is high because I feel like I can't move my joints w/o being oiled and I'm much more fatigued than usual. My liver enzymes are also high. All this and my rheumy told me I had "borderline lupus" (very mild) Yeah, right! We know our bodies...keep up the good fight!
so you were told you had borderline too? i was so stiff and tired when i got out of that car yesterday i had to go straight to bed, this is ridiculous and this is my 2nd opinion by the way - today i can hardly walk i just have to shuffle my feet.
nates tired mom said:
As far as the weight issue is involved, I think what she said is a load of ....
I have PCOS and all I do is gain weight. Not to mention every time I have a round of steroids, here comes even more weight.
I've had no redness or swelling, but when my SED rate is taken, it's been high. I can always tell when my SED rate is high because I feel like I can't move my joints w/o being oiled and I'm much more fatigued than usual. My liver enzymes are also high. All this and my rheumy told me I had "borderline lupus" (very mild) Yeah, right! We know our bodies...keep up the good fight!
Sounds like we're almost in the same boat. My doctor won't say those final words of "you have lupus" My rheumy today said it's easier for them to tell you what you don't have than to tell you what you do have since there are so many possibilities and plus, it gives you a label for the rest of your life. If you are really questioning your doctor's opinion and what not, don't hesitate to get a second opinion. Go with your gut. I know I have lupus. I have every single physical complaint possible, but nobody will say those three words because my blood work isn't weird enough or some other lame reason. Praying we both get some answers soon!
that was my 2nd opinion the 1st opinion was the first batch of blood work that indicated an autoimmune disorder, along with the physical symptoms i had. i went and got a second opinion from a clinic a few hours away from me due to their high standards, they are like a mayo clinic, just a clinic full of specialist since there are none here i'd let touch me for personal reasons and they only come to my area twice a month. so i dont know what to do.
Ballerina8876 said:
Sounds like we're almost in the same boat. My doctor won't say those final words of "you have lupus" My rheumy today said it's easier for them to tell you what you don't have than to tell you what you do have since there are so many possibilities and plus, it gives you a label for the rest of your life. If you are really questioning your doctor's opinion and what not, don't hesitate to get a second opinion. Go with your gut. I know I have lupus. I have every single physical complaint possible, but nobody will say those three words because my blood work isn't weird enough or some other lame reason. Praying we both get some answers soon!
I'm sorry, I didn't realize this was your second opinion. Just keep pushing for answers. Perhaps since she's new she just needs more time to sit and ponder your issues. My doctor looooves his blood work and won't diagnose anything without blood work and ruling out every other possibility. Hopefully this is just the case with your doctor and she just needs some thinking time and lab results.
I really hope that people took the time to read the post that JC posted yesterday or the day before regarding doctors and their ability to deal with people with chronic and life threatening diseases. It was very informative and gave me a better understanding of what the doctors face when treating patients with Lupus and other chronic diseases.
The most important thing that I got out of it is that you MUST have a doctor that is willing to be your partner in this journey. If you feel this is not the case, it's time to find a new Rheumy.
I am sorry to be so blunt, but you have to be able to leave with fewer questions than you arrive with.
Hugs,
DeAnne
ya, your probably right, i will just keep on keeping on, im just so tired i cant even think right now about it, i will wait for the results and go from there, who knows, maybe my blood work will be good and i can deal with the fibromyalgia (that i dont think i have) or maybe i will just get better. i dont know about you but i guess i am so disgusted because this is what i do. I start out
trying to be really positive, eating right, exercising, then i over do it a bit or not, will be in severe pain, and then i am back to square one, depressed, anxious, then i shut down mentally and physically and its that physical part that really gets me, especially those days when i cant walk - when you cant walk you tend to not be able to get much done , take care , im taking drugs and taking a nap im dead tired and havent done a darn thing worth while
Ballerina8876 said:
I'm sorry, I didn't realize this was your second opinion. Just keep pushing for answers. Perhaps since she's new she just needs more time to sit and ponder your issues. My doctor looooves his blood work and won't diagnose anything without blood work and ruling out every other possibility. Hopefully this is just the case with your doctor and she just needs some thinking time and lab results.