As so many of you suggested, I sought a second opinion about my symptoms and labs. Turns out she went to school and worked with my current rheumy (even though I chose a different hospital system) and spent the whole time telling me what a wonderful rheumy he is. Which I don't doubt; I just don't think he really sees me, and she didn't either. My only hope is that some of the obligatory labs she took will show something; otherwise, I am like a ship at sea without a safe harbor.
Hi Sharon, I was totally frustrated with my rheumy until she did some blood work out of obligation (her word, not mine) and then I got my diagnosis of MCTD. So, keep going and keep pushing those docs. I would have changed before she ran these tests but I had already been to the only other rheumy ipwithin 100 miles. So just keep pushing them and tell them every single symptom. I think it was one troublesome thing (but not that bad yet) that I told her that prompted the additional tests. Good luck.
Hugs Sha. As a "complicated patient" according to more than one doctor, had to learn to do everything I could to advocate for myself, as well as make any helpful lifestyle changes, and more. I so get your frustration at not finding answers. Please remember that the bottom line, of living a good quality of life, is what matters. You can always look into different avenues towards better wellness, like the nutrition you need, stress reduction, finding and doing what brings you true joy, etc on your own.
Lupus, and the often coexisting disorders and diseases, are a tough life challenge. Don't give up on yourself. Riding what I call the medical merry go round, from this doctor, to this specialist, tests, labs all are exhausting. Maybe take a week off from it, rest up, then begin again?
One tool that can be helpful is to keep what I call a health diary. I list a date, then symptoms, and tests or doc visits, and outcomes.. I also always ask for copies of all tests done including discs of imaging, and a sheet of lab results. It sure makes going to another healer of any type easier.
I know it hurts to feel like no one hears you. At least here, you can get support, and understanding, as we all have had a ton of the same experiences. I'm glad you posted, reached out, and are letting us be there for you!
Great ideas about test results and diary. I'm sure that will be helpful. I keep records of labresults but I am now keeping a diary of foods and symptom. I am trying glutenfree, we'llsee if that has any effect on my belly.
I know it is hard and I don't want to sound corny but don't give up! When your body hurts I think it is trying to tell you something. Don't stop if the two docs share the same feeling about you get another! You are worth it! Hand in there and be tough with your docs if you have too!
One thing about this group in addition to a lot of wisdom, there is so much encouragement! It means so much to have a place to whine a little and be understood, then encouraged.
I can relate to how you feel with doctors. I originally went to my PCP when I got sick and he still tries to find any explanation for my illness, except Lupus. I am on my 3rd Rheumatologist and I think I have finally found one who listens to ALL the symptoms, not just the worst. The other ones would dismiss the symptoms I was having. My first told me she didn't think I had Lupus because I didn't have the "butterfly rash" on my face. I now get that on my face when in the sun. So, with that I could see that she wasn't looking at the whole picture of symptoms. I try to remain hopeful the doc I seen last Monday will be helpful. He run tons of labs and I am waiting to hear the results. Being on this site has inspired me to become an advocate for myself medically. I have become very knowledgeable and educated on the test and labs that are being run. That way when they tell me the results, I know what their talking about. I also took ohsoperplexed advice and started keeping a journal of my activities, pain, and symptoms.
I hope your labs will shed some light on things and you can get some quality treatment. Stay positive and keep us posted.
I'm so sorry to hear that. It's a hard road to go down especially when they know each other. I had to keep trying until I found the right people for me. Took four years but it finally worked. Now I have a great team working with me. I don't know what state you live in but if you live in WA state we do have some really awesome docs and I worked with a few of them when I lived in FL who were really great. keep trying and don't just accept that they are right, I did that and now I am paying for it health wise. Push until you find the right docs for you, they are out there. I'd feel discouraged too and have in the past but it does get better, get aggressive with them, it works. Hope you are doing better soon and chin up know it's hard but you'll get there. Snowwolf
Hang in there! Everyone's condition/disease is unique and obviously even doctors have to figure it out and sometimes slowly... crossing my fingers that your recent tests are definitive somehow so they'll give you a treatment path. And if not, keep doing what you can. YOU know your body better than anyone, you know something is wrong. Keep at it.
Hi!, depending on how long you have been with the first doctor, and have went to get a second opinion ,and that doctor gave a knowledge about your doctor and his experience , I would give him time , and I would try to build understanding relationship with him! Give him a chance to relate back to you that you are not denying his experience ,but you have concerns about your health! And that you want him to help you deal with Living with Lupus! Have a heartful talk with him …Beverly L.