Hi All! I just came back from seeing my new rheumy and what a shock. I have been thru. She told me that one can not have both lupus and sjorgren's. Then she said that fibro is not really an autoimmune disease. She only sees "sicca syndrome" which is the sjorgren's. She "currently is not seeing any active clinical feature of SLE or Sjorgen or fibromyalgia." She has decided I have chronic pain secondary to degenerative arthritis. She has told me that she is taking me off of Celebrex, prednisone, plaquenil unless I really do test positive for SLE. Changing my Lexapro for depression to Cymbalta because that will help the fibro if I test positive for fibro!!!! When did a blood test become available for fibro? I told her I don't do well on Neurontin but she is considering putting me on that or Lyrica. Now, notice the discrepancies in what she wrote and I have quoted from her notes that I got.
I have been thru all this before and it was when we lived here 10 years ago that it happened. These are all new doctors that I am seeing because of that and I really don't think I can go thru all this again. I don't want to go to IL, a 4 hour drive, to see the doctor who handled my lupus, etc there.
And, by the way, I told my new PCP that due to bad reviews I read on the internet that I didn't want to see Dr R and that is exactly who he had me see. I went because I know that something is not right and I needed labs and the PCP would not order.
You NEED to change your rheumatologist right now!! That is awful!! You can have lupus and sjorgrens and it doesn’t matter what your bloods say because you are on medication that helps!! The medication can change a lupus patients bloods to almost normal… You have to get this sorted out get a new rheumatologist otherwise this one may set you back to the beginning and you don’t want that… Lupus is for life it doesn’t just come and go and if you’ve been positive for it before you will still be positive!! I really hope you can get this sorted… Do some research on it and prove that idiot wrong xx
I got all the tests done today that she ordered...urinalysis, feet and hands xrayed , blood work that required 10 vials and a least 25 different tests in those vials to be done. Sooo, I am going to go back and get the results in one week and if she tries to tell me that I don't have something then I am gone. The big problem is that all the rheumies are in one practice!!! There are some on the other side of town but....
Thank you for your answer.
cayleigh said:
You NEED to change your rheumatologist right now!! That is awful!! You can have lupus and sjorgrens and it doesn't matter what your bloods say because you are on medication that helps!! The medication can change a lupus patients bloods to almost normal... You have to get this sorted out get a new rheumatologist otherwise this one may set you back to the beginning and you don't want that... Lupus is for life it doesn't just come and go and if you've been positive for it before you will still be positive!! I really hope you can get this sorted... Do some research on it and prove that idiot wrong xx
I am setting the ground work since I wrote this. In Illinois the doctor I went to has what they call "My Chart" You can go on there and see your list of prescriptions, ask for refills, ask questions of the nurse, PA or the doctor and they will reply the same day normally. I had written the doctor yesterday (He offered to do this for me before we moved) and told him what happened last week and what he thought it was. He knows what I have been thru trying to get diagnosed, treated, etc. He told me that he was sure the doctor would say that I was in the middle of a bad lupus flare due to sun over exposure and would offer advice,etc. Sooo, I have faxed to him what she herself wrote about not thinking it is lupus, etc, all the tests she ordered, and then told me what she had not written down about the other stuff. I am waiting on a reply from him.
My Rheumie is Dr Ehlich at Lutheran Medical Group. He's has no bedside manner, but he's a good doctor. There is no test for Fibro - its a series of pain in specific points, but its not an auto immune disease. I can't believe that she said that one can't have sjorgren's and lupus?????
Hang in there, and please let us know what your IL doctor says?
Hi Trish! That is who I was supposed to see per Dr Cabe but something got scrambled in his brain. Instead he referred me to Dr Reddy in that group and I had specified that is who I did NOT want and I told him why. He brought up Ehlich and I said fine. Or Dr Ringwald I said would be fine. Now, it sounds like I can't change doctors within that group. I am furious! I am calling the PCP tomorrow because when I got their message that they made a rheumy appt for me and told me to call the nurse she then told me that is who I was seeing! I told her right then that I did not want Reddy and that I had told Cabe that. The nurse told me she was sure I would like her. I told her that her reviews are not good and she just said "oh". I know there is no test for fibro as I have had it for 30 years now. No one has disputed that except one doctor and now her. I even got disability due to fibro!!! Honestly, I never ever want a woman doctor because every time except for one I have had bad experiences. I have been searching the internet for hours for someone specializing in lupus here in Ft W and it isn't broken down like that. The suggestion was to look at immunologists but that hasn't led me anywhere either. I have been going between crying and being angry all afternoon. I have 24 bloodtests that were done today. If she takes me off of all those meds I will be a vegetable again like I was for over a year before finding a doctor who got the positive blood test for lupus from me. This doc says if it isn't positive I have to go off. I will start making the 4 hour trip to IL if necessary but that is not good for me at all as it has me down for days after. I am ready to walk into the PCP and let him have it then fire him too!
Thanks for listening again but I really am scared and worried. At age 65 I nor anyone should be going thru this.
PS Mayo Clinic is the one who told me that Fibro mimics auto immune disease and quite often they treat it as such. But you are right, it isn't really auto immune. It was how she phrased it which I didn't make clear, that fibro wasn't any big deal. And oh, the only thing that could possibly be causing me pain is RA as fibro an lupus don't cause any real pain.
HUH? LUPUS DOESN'T CAUSE ANY REAL PAIN EITHER? I CAME ONLINE BECAUSE IM ALMOST IN TEARS FROM THE JOINT PAIN IM HAVING AND IT HURTS TO TYPE CAUSE I HAVE SORES ON MY FINGER TIPS FROM A LUPUS FLARE. I WOULD GO TO ANOTHER DOCTOR EVEN IF YOU HAVE TO GO TO THE OTHER SIDE OF TOWN. I CANT BELIEVE SHE IS THAT UNEDUCATED, THAT IS SCARY. CHANGE DOCTORS AND TELL THEM THAT THEY ARE NOT AUTHORIZED TO SEND ANY OF YOUR MEDICAL DX ANYWHERE. THEY USUALLY HAVE YOU SIGN A FORM THAT GIVES THEM PERMISSION TO SEND THAT INFORMATION BETWEEN DOCTORS SO MAKE SURE YOU REVOKE THAT PRIVILEGE. FIND ANOTHER DOCTOR (PCP ALSO) AND DONT EVEN MENTION WHAT THEY SAID TO THE NEW DOCTORS.
reet said:
PS Mayo Clinic is the one who told me that Fibro mimics auto immune disease and quite often they treat it as such. But you are right, it isn't really auto immune. It was how she phrased it which I didn't make clear, that fibro wasn't any big deal. And oh, the only thing that could possibly be causing me pain is RA as fibro an lupus don't cause any real pain.
Hi Jazzy D. The problem with me going to another doctor anywhere in town is there aren't many that are better. I am going to call a couple today to see if they know about Lupus. There are some that don't deal with lupus. The town is very easy to get around but I did want to stay on this side just for future ease. I am sorry you are hurting so bad. I hope you get better soon. Thank you for your note to me. It helps to know that I have so many people that understand totally.
PS Mayo Clinic is the one who told me that Fibro mimics auto immune disease and quite often they treat it as such. But you are right, it isn't really auto immune. It was how she phrased it which I didn't make clear, that fibro wasn't any big deal. And oh, the only thing that could possibly be causing me pain is RA as fibro an lupus don't cause any real pain.
PS Mayo Clinic is the one who told me that Fibro mimics auto immune disease and quite often they treat it as such. But you are right, it isn't really auto immune. It was how she phrased it which I didn't make clear, that fibro wasn't any big deal. And oh, the only thing that could possibly be causing me pain is RA as fibro an lupus don't cause any real pain.
You got that right, Trish! I got up this morning and the first thing I thought of was her. Now, that is not a good way to start a day! LOL I am going to start calling doctors soon. My PCP is first in line. I may be changing PCP's. I like him and so does my husband but if he can't listen any better then that then I am gone. And Dr R I will see next week then I am done with her. I will get copies of my labs and xrays and then I am gone from there. Ya know, because of the last time we lived here and the bad docs we had (we did have a couple of good ones) and one that caused my husband to almost die, we both were hesitant to return here due to bad doctors. We decided because of the cost of living to return and surely we wouldn't have bad doctors again. Boy, we sure were wrong! My husband did find a good urologist and we know that if his celiac disease raises its ugly head again we will go right back to Northwestern in Chicago were they saved his life or back to Mayo where they saved it the 2nd time. A doctor here that was supposed to be so good totally misses his celiac disease. I remember a very long time ago when there were many good doctors here and it sure seems like that is now the opposite. We have a very good friend who is a retired doctor, was very well known here, that told us to get out of here and go to Chicago if we wanted to save my hubby's life. At the time he was still on he board of directors at Parkview and he told us that he was so sad to see that the quality of doctors was going downhill quickly. He also told us that he and his wife get excellent treatment and he knew that it is because of him and his reputation that is why they get it. He told us that he found that terribly sad. I'm a fighter so I will find a good doctor somewhere! lol Thanks Trisha for your support and also to everyone else for your support too.
I'm really happy with my PCP, he picked up on my symptoms. Why even bother seeing Dr R, don't give her anymore time to get into your head. Can your doctor from IL refer you to any doctor here? I'm sorry you're going through this.
I want to get my labs from her then have the pleasure of firing her! LOL I am a firm believer that doctors are my employees and not the other way around. I intend to tell her just that.
Reet, wow, can you phone your doctor who is 4 hours away, and see if they can recommend someone to you? If there's a test for fibro, no one here knows it. Even in the general profession, they do not even use all the tender points total to diagnose any more. hugs, rest, and please don't let this make you stress?
I have a message into the nurse at my PCP to let her know how horrible the rheumy was and I have an email sent to my IL doctor. I will drive to my IL doctor if I have to do that. The thing is that the trip is so hard on me. It takes me a while to get over the drive whether I drive it or my husband does it. When you aren't in your own home it is hard to relax and we stay with our son so that is okay but not my bed, etc. Referrals from other doctors don't always work out as my story shows. thank you so much for your note and kindness.
BTW, does anyone get diarrhea after being in the sun?
Update! I went back to the rheumy yesterday. She was very nice and told me that she got all my blood work back and lupus tests, etc were all negative. I said "that is what I expected." she went on to say that C reactive protein level and a couple of other inflammatory tests are very high. Urinalysis ok and xrays show a lot of OA. Only surprise for me was urinalysis as my output is way down. So, she said I am not taking you off of anything. That is when I knew my PCP called her. I said GOOD! She saw the 2 week old wound on my leg again and told me she thought it was infected. Then she saw the edema in my legs and feet and looked startled. She said "this is much worse then last week. I said, I knew that. She wants to see me again in August and I have blood tests again the week before. Then we talked about the prednisone and I told her that I would like to wean off it again so I am. Then she told me I had to get to my PCP about the wound and edema. Well, the PCP was a bit cool to me. He took me off of one diuretic and put me on a stronger one. It hasn't helped yet today. Then he started me on an antibiotic for the wound. Then I talked to him about his referral to the rheumy. He got defensive and told me he over ruled
me because he has better judgement then I do who the best doctor is. I told him I had checked her out and there was a good reason why I didn't want her. He told me that I shouldn't believe anything on the internet it was just sour grapes that people ha. He went on to tell me that it doesn't matter if a doctor has a bad bedside manner or we have personality differences as long as they are taking care of us. I told him...again... that I have not had good care and I would not tolerate someone who would start taking me off of a bunch of meds and tell me that I didn't have whatever. He looked at me and said that she is really good and I would have to stick with her. I told him that I would stick with her for the time being as she was much better but we would see. Now I am ready to leave the PCP. How arrogant these doctors are in this town. It is here where I got in horrible trouble years ago and so did my husband and we are lucky he is still alive. That was thanks to a retired doctor that lived across the street and told us to get him to Chicago. Jack, the doctor, suspected and told us he thought it was gluten intolerance which we thought we had stopped for him but we didn't know all the hidden gluten in almost everything at the time. Jack told me at the time that I would do well to look elsewhere for a different doctor then. At the time he was still on the board of directors at one of the big hospitals and he was very upset at the quality of doctors here at the time. He will be really upset as to what I am getting again here. I really like being back here but I wish the doctors would get rid of their attitudes!
Trish...My PCP also told me that Dr Ehlich doesn't treat lupus. He only treats Fibro.
I'm sorry that you're getting these arrogant doctors! I'll be sure to let Dr Ehlich know this, he'll appreciate it lol. Dr Ehlich originally diagnosed me with RA, but when I returned for my second appointment - he said he didn't know what to call me - the bloodwork says Lupus even though I didn't have a lot of the symptoms at the time. Kind of amazing for a dr that doesn't treat lupus huh? Ditch your PCP....