View Full Version : Had my appt yesterday

07-01-2009, 07:04 PM
I had my appt with the rhumatologist yesterday. I gave her all of my symptoms and bloodwork that my primary care doctor gave me. She looked at the tests, asked lots of questions and gave me a physical. She said the joint pain in my fingers and my wrists are due to carpal tunnel. She said the pain in my knees could be due to my weight. She wants to run some tests next time I go for my anemia. I have been anemic for about 8 years and no one can tell me why. She said that I am also tired because of the anemia. She took bloodwork but said that she would not run the Lupus test again. She also took x rays of my hands and knees. Overall, she thought that I don't have Lupus because of lack of swelling in the extremities and the low titer. She did talk about Fibromyalgia as a possibility. From now until I see her again in 6 weeks, she wants me to take anti inflamatories, iron and wear a hand splint for the carpal tunnel. She also wants me to lose weight. The truth is I am not sure if she is right. My symptoms match alot of what I am reading here. My husband thinks I am crazy to get a second opinion, why look for a diagnosis. Should I wait and try these things and see her in 6 weeks and see what she has to say(if bloodwork comes back strange, she will get in touch of me) or get a second opinion? AHHH:wacko::wacko:
Thanks for listening.


07-01-2009, 10:45 PM
It is hard. We do look for diagnosis because we have to find an answer to why we feel the way we do. It is peace of mind for us. It allows to say, hey, I knew something wasn't right and finally someone believes me. It is something you will search for and hope for until the day it comes. The bad news is, it may take a bit in order for them to figure out what is going on. This is where I have learned the greatest lesson and received the greatest gift from my Lupus.........the ability to be patient. It is easier said than done and we all can agree with that! Also, remember that you are your biggest advocate and you will only be able to really count on yourself to push for the answers you are longing for. With that, if you have a gut feeling that something isn't right and you do not feel like you are getting the care you need.....get a second opinion. A good doctor would back that up and understand the need for it. There is also nothing wrong with waiting to see what the lab work says. It should only take a week to get it back and the doctor can send you the results and you can then take them, along with everything from your family doctor, to the doctor you choose to get a second opinion from. I was told I had carpool tunnel syndrome and I new in my heart that they were wrong so I got a second opinion. It was the best decision I made for myself and this will have to be a decision you make for YOURSELF! I will be thinking about you and sending you hugs while you try and decide what is best for you and your peace of mind :hug:

07-02-2009, 04:56 AM
Lisa....Danica has given you wonderful great advice...I would like to add...


Carpal Tunnel does not cause joint pain. It is nerve pain. A tunnel forms with the carpal tunnel ligament in your wrist that protects a main nerve..the Median Nerve to your hand and nine tendons that bend your fingers. Pressure placed on the nerve, ... produces the numbness, pain and, eventually, hand weakness. Tingling or numbness in your fingers or hand, especially your thumb and index, middle or ring fingers, but not your little finger.

The pain can also radiate up you arm.

I know.. I have had carpal tunnel surgery and it is most definitely different from Lupus joint pain in the wrist and fingers. With carpal tunnel my fingers felt like they were going to explode, implode like hot dogs in a microwave and would swell up to deformity...Lupus arthritis is not the same.

Lupus swelling..edema in the extremities is not a diagnosing symptom, so, it to be absent is common, though many of us experience it intermittently. I do. For me it isn't kidney involvement...just the ole run of the mill edema...

I suspect the x-rays of the hands is looking for arthritis and not carpal tunnel..x-rays are not for nerve, soft tissue damage. I would think she would have order an EMG, nerve study to see if there is median nerve damage or impediment.

There is no one Lupus test..they are several and they in themselves are not the diagnosing tool. Family history, accumulative symptoms are also part of it...its a puzzle and they have to see what fits. Rule out other diseases....

Laboratory tests to help with diagnosing Lupus:
o Complete blood count
o Erythrocyte sedimentation rate (ESR)
o Urinalysis
o Blood chemistries
o Complement levels
o Antinuclear antibody test (ANA)
o Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB])
o Anticardiolipin antibody test.

Hope this helps...

07-02-2009, 05:30 AM
I would get a second op. if you don't want that dr. to know call the lab yourself get a copy of all test thats what i do that way i have my own copy for every dr. i have to see.

this disease is hard to dign. and you do need be patient unfortantly.

as usual oluwa has sound advice. go with your gut if you are the only person who knows how you feel and if something not right go find out what it is.
good luck lets us know what happens.

07-02-2009, 10:57 AM
hi lisa,

you are getting so much incredible advice here, and i hope we are able to help you.

You said your dr. wants you to wear a hand splint for carpal tunnel. When my wrists first started hurting so badly, my dr. had me to try the hand splint. The pain that it caused was unbearable....i could not wear the splint, and she agreed that i needed to stop wearing it. So, if you try the splint and it causes more pain, you might want to stop.....if your pain in your hands and wrists is from lupus or fms, the pressure of the splint will cause even more pain.

07-02-2009, 11:25 AM
It is extremely frustrating this whole process. The best thing to do is go with whom you feel comfortable. I have loved all my Doctors but had to switch do to switching jobs and also looking for second Opinions. My new PCP is awesome he says autoimmune's are "like the monster behind the wall and the only thing you see is the nose" Not enoguh to tell what type of monster it is or if it's even a monster but enough to know it is there. If you like your doctor stay with him/her but don't be afraid to push for different tests, the best doctor is the one you can work as a Team with. My new Rheumy was the first out of 3 to test for Sgjorgen's, so although they are all well qualified it is not always easy to tell. Hang in there and GOOD LUCK! :D

07-02-2009, 03:26 PM
My pcp has an autoimmune disease and it runs in her family. She's very understanding of the process. She told me to give it 2-6 years for a diagnosis... as that's the average waiting time for a diagnosis to be found ...since autoimmune diseases tend to mimic each other and other diseases, and lab work is tricky and not always reliable.

I'm currently looking for my fourth rheumy. I'm looking for a rheumy with the bedside manner of my pcp.

If you feel you need a second opinion, you're probably right. And besides, it couldn't hurt just to see what someone else will do.

Each time I see a new specialist...they find something the others missed. Maybe all combined I will eventually get one doc that will put it all together and finally name this monster in my body.

07-03-2009, 06:21 AM
Thank you to everyone for their great advice. I think that I will get that second opinion. Fondly, Lisa