Just got back from my appointment with my new Rheumatologist/immunologist and he informed me that my prior rheumatologist had not done standard test that were to be done yearly for almost Five Count em five years! Not checked my liver function, kidney function, adreals or bone density. I have been on prednisone consistently for almost that whole time. And to top it all off he printed out notes that he put on my chart that said I didnt have a rash in May and I have had a rash and a flare-up since last Halloween! He either didnt listen to what I was saying to him or soft selling my symptoms. He even knew I was so bad off with the rashes in my groin area ( yes groin) and chest area that I was seeing a dermatologist. The new doctor has temporarily put me back on higher doses of the prednisone to get the flare-up under control and we are looking at several new treatments to lower the dose and keep the disease under control. he has also requested all the "over due" tests be done pronto. I think I might have found a winner ..say a prayer . my question is this has this happened to anyone else and how did you handle it. I am so angry and no where to put it
Julie, You have vented at the right place. We all have been frustrated by not having thorough lab work done and finding it after the fact. But be kind to this new doctor...he sounds like a keeper.
I've learned getting angry doesn't accomplish anything for our good. Let go of the past and be attentive to this doctor. He may be the answer....Yay! Some struggle for years finding the right fit. At least you on the right road on your journey.
Faye
Dear Julie,
I agree that you have found a Dr that is on the ball, who will take care of you and keep an eye on what is going on! Finally! What a fantastic find, I am so happy for you, hang onto that one for dear life!
Such a shame we have to go through all of this, I know you are justifiably frustrated, but you are on the right track, heading in the right direction, and have the right Doc, vent and get the negativity out and celebrate the triumpth!
Hugs,
SK
Hello Julie,
I am sorry for the upset the other rheumo caused and these issues are unacceptable but that's just how some of them are..my old one was and it's so annoying when your suffering and you mentioned being bad with your groin also as i remember you mentioning it.
Well it sounds like the new doctor is using his head and getting the ball rolling like my new rheumo and i wish you the very best of luck with him treating you and thanks for updating we also.
Hugs & kisses Terri xxx
Julie
I know the frustration and anger you have right now, but you must put it away! You have to move forward and hope for the best! It sounds like you are in good hands now! God forbid, If something was to come back from the testing that the new rheumy is doing then you have an issue you can address with the old doctor! You would have options then. You could report the old doctor to the state board now! You could see an attorney if you have suffered from his care. Let’s just hope and pray for the best results and let go of the negative stuff for now. Cross that bridge when you come to it if need be.
You have to became very proactive with this disease. You need to be in charge of what is going on. Please educate yourself on the medications you are taking so you know what tests should be being down to make sure the medication is not hurting your organs and bones!
I am so glad you changed rheumys!!! I had a second opinion the other day with a rheumatologist and it was a joke! The doctor told me that firbomyalgia was just clinic depression and that is why people have pain in their bodies! A chemical inblance in the brain! He agreed that I have cutaneous lupus, but because my blood work is negative he told me I don’t have SLE! He told me I don’t need to be on any medications and that I should just simplify simplify simplify my life. This doctor was at the 10th leading hospital in the world! So see there are all kinds out there, we just have to be careful choosing the right one for us!
Best of luck with your test and your new rheumy…Deenie
Thanks Deenie and Everyone else,
I am feeling much better today. I actually knew these tests we supposed to be done and assumed because he was drawing blood they were however, as he never sent me test results and his staff would not give them out over the phone I didnt know they werent being completed. According to Dr Ghani he was running the same test over and over the one that proves you have SLE which of course has been established over 20 years ago, making it a useless test. Oh well like you have all said focus on the good , brush off the bad anbd deal with what comes when it does. So nice to talk with people that really understand . Love to All God bless XXOO
Dewing3569 said:
Julie
I know the frustration and anger you have right now, but you must put it away! You have to move forward and hope for the best! It sounds like you are in good hands now! God forbid, If something was to come back from the testing that the new rheumy is doing then you have an issue you can address with the old doctor! You would have options then. You could report the old doctor to the state board now! You could see an attorney if you have suffered from his care. Let's just hope and pray for the best results and let go of the negative stuff for now. Cross that bridge when you come to it if need be.
You have to became very proactive with this disease. You need to be in charge of what is going on. Please educate yourself on the medications you are taking so you know what tests should be being down to make sure the medication is not hurting your organs and bones!
I am so glad you changed rheumys!!!! I had a second opinion the other day with a rheumatologist and it was a joke! The doctor told me that firbomyalgia was just clinic depression and that is why people have pain in their bodies! A chemical inblance in the brain! He agreed that I have cutaneous lupus, but because my blood work is negative he told me I don't have SLE! He told me I don't need to be on any medications and that I should just simplify simplify simplify my life. This doctor was at the 10th leading hospital in the world! So see there are all kinds out there, we just have to be careful choosing the right one for us!
Best of luck with your test and your new rheumy.........Deenie
Actually it is common for the rheumatologist to act as a consultant and your primary doctor is really the one responsible for annual screening tests- although I don't understand why your rheumie didn't run bone density since you are on prednisone. My GP runs the annual tests my rheumie runs his specific tests to monitor disease activity but does not repeat what other docs are doing and the hematologist runs tests very specific to his area of expertise. So for lack of annual monitoring you really need to discuss with your primary or family doctor as your overall health is his primary responsibility
I am here to tell you to be careful that 2 different Doctors are not running the very same blood tests, I was feeling so badly, I did not take notice, and ended up with a bill of nearly $600.00 not too long ago! My co-pay is usually $40.00! Lesson learned the hard way!
Had to pay it because of the regular blood tests needed to be on a biologic!
Julie Hi! u mentioned that u get the rashes i ur groin area! I never had a problem with rashes in my groin area until thus past year right after i was diagnosed with lupus! Now i cant get rid of it. My gp has perscribed different steroid creams that have failed misurably. Its like a heat rash,and it seems like the lupus just makes it easier for me to get em an it makes it to were it want go away.I dont know if its that r if it is a lupus rash? R if there is a difference? It makes me misuarable. It gets to the point of almost bleeding.Is this similar to what u r experiencing?
Hello,
My Dermo treated with a steriod and anti-bacterial cream mixed together and it was GONE in tow day ketoconazole and desonide cream. Hope that helps. Lots of Love to you Julie
moniquecrader said:
Julie Hi! u mentioned that u get the rashes i ur groin area! I never had a problem with rashes in my groin area until thus past year right after i was diagnosed with lupus! Now i cant get rid of it. My gp has perscribed different steroid creams that have failed misurably. Its like a heat rash,and it seems like the lupus just makes it easier for me to get em an it makes it to were it want go away.I dont know if its that r if it is a lupus rash? R if there is a difference? It makes me misuarable. It gets to the point of almost bleeding.Is this similar to what u r experiencing?
Dearest Ann
What a lovely thought a God Box. I have the perfect box in mind to a wooden plain box that smells of cedar. I am feeling much more myself these days the new guy upped my prednisone to 40 mg a day and most of the flare up symptoms I have been dealing with for almost a year are lessening and lessening. As for the anger I can and partially have let it go. you are so right it does no one any good and keeps the stress levels high. Dr Ghani is reintroducing the methotrexate he feels that the other guy just tried to introduce too much too fast and thats why I had such an adverse reaction. I love the idea of getting the labs done a week before then discussing them at the appointment that is scathingly brilliant! Maybe its just the prednisone but with the pain almost all but gone I am feeling so much more positive about prognosis. Thank you so much for all the love and support I really appreciate it. :)
Ann A. said:
Dear Julie,
Do you have God box? When I was a little girl my grandmother was always, "Putting it in the hands of Jesus." I thought that she was a religious fanatic. Then when I worked with 12 step programs, I was introduced to the God box. I actually have a beautiful white box - suitable for holding the bridesmaids gift at a wedding. When I have anger that I do not know what do with, I write about. I then take the sheet of paper and put it in the God box. My goal is to leave it there. Sometimes I have go back and take it out. But over time I can usually allow things to stay in the box for longer and longer periods of time. My anger at incompetent physicians is in the God box.
My current primary care physician has me come in for lab work the week before my office visit. During the office visit he starts by allowing to tell him how I am doing and to talk about any concerns that I may have. Then he pulls out the result of the lab work and hands me a copy. We go over each of the results one at a time. I bring my copy home with me and store it in a three ring binder.
No other physician has ever done this. All of the others took the blood on the day of the office visit and then said they would call if there was a problem. I now know that I should have insisted on copies of my lab results. Armed with my notebook I can show any physician the pattern that my level of lupus activity takes over the course of a year. Having this data collected and made available to me has allowed me to learn so much about my body and how it reacts to changes in my evironment - stress, seasons, nutrition etc. When I have to see a new doc in December and he says - "You don't have lupus." I hand him a copy of the blood work from August.
We have to work so hard. Glad that you have found a physician who is also willing to work for you. Please find someplace, outside of yourself, to store the anger.
Ann A.
Julie,
I know just how you feel I was going to this one rhemy for 11 years then I decided to change ang my knew rhemy did alot of blood work and i finds out that i have things wrong with me i never heard of. And in the notes that he wrote some of it was wrong and some was a lie.. so i know just how you feel.
Good luck on everything you do
Tanya
Hi Everyone
Just thought I would let everyone know on this bright and beautiful Sunday that I am feeling much better. the rashes are all but gone and the joint pain is so much more manageable. Oddly enough the acupuncture is working not only on my pain but my stress as well. It is a very strange procedure but hey it works. I will keep everyone updated on our ( Dr Ghani and I ) results with mixing the traditional treatments with the alternative ones. I want to Thank everyone again for the love and support and reminding me what is really important. God Bless XXOO
Hello Julie,
That was one nice cheery note you added there and i am pleased your rashes have more less gone and the accupunture is doing you the world of good...it's liovely to hear pleasant news once in a while.
Thinking of you dearly Terri xxx
Thinking of you too. I hope all is well or at least better. BIG HUGS TO TERRI!
Tez_20 said:
Hello Julie,
That was one nice cheery note you added there and i am pleased your rashes have more less gone and the accupunture is doing you the world of good...it's liovely to hear pleasant news once in a while.
Thinking of you dearly Terri xxx
Hi Julie,
Actually i'm down mate besides being stressed.
