Tomorrow I see my new rhuematologist. A new office more conveniently located for me opened up, but with a different doctor than I'm used to.
So, I have a bunch of things to talk to him about like the eye problems I'm having (though the opthamologist says it's most likely the new job), the ear and sinus issue (though, I guess I need to see PCP or ENT for that), and I want to ask about my concerns about lupus. If you recall, I have been on Plaquenil for a year now and it's worked wonders (one of the few drugs that have worked for me!) I had asked my current doc about the possibility, but was completely dismissed.
So, how do I ask him and answer the question 'why do you think you have lupus' without sounding like a total hypochondriac? (I even posted this question on the lupus forum!) I know there is a fine line between psoriatic arthritis and lupus side effects (not to mention the problems I have with my liver) - how can they determine for sure? I know my ANA has been positive for a few years where my RA factor and SED rate are often fine. I don't really have the definitive markers like the butterfly flush - only a long list of complaints that DO fall under psoriatic arthritis and liver problems as well as lupus.
I know we've all been through this problem w/doctors, we've discussed it, and none of us have come up with an answer! I just need to grasp at any last straws of help and encouragement before I see someone new and HOPE that I am not earmarked as someone to ignore who complains and is a hypochondriac. I just want to know one way or another! I worry that there may be things w/lupus that need to be monitored that are dismissed when you don't have it.
Hey CaMama! Going to a new doc is always scary and full of apprehension. Take a few minutes to write everything down that you need to ask him and then don't forget to take it with you!! Explain your symptoms in categoties and let him respond. Then, move on to the next area of concern. Probably asking stuff in small doses won't overwhelm him or you.
I know that when I first went to my rheumy I was feeling so extremely terrible and had no idea of where to begin but she did and she guided me through everything. I didn't get all my answers in those first few visits. Some took several years but all along the way, I knew it was something we were on together. That's the way her whole staff is!! You are very much entitled to receive answers to your questions. I'm sure you've heard this before but: "The only stupid question is one that is not asked." Just go in there prepared with your questions. Take somebody with you if you think you might miss some of the rheumy's answers. Sometimes it takes us all several doctors and doctors visits to find just the right one. Hang in there! And take it slow! Don't let him rush you. Remember you are paying for HIS time!!! Please let me know everything goes. I'll be thinking about you.deejane
Hi CaMama,I hope that your appointment goes well tomorrow,you said that you were having eye problems I'm on Plaquenil my self have been on it for about two month's now and my Rhematogist told me that I would have to have my eye's checked evry six month's because it can cause eye problems.When I was diagnosed with crohn's I was getting a gritty feeling in both of my eye's and they were driving me crazy so my GI told me that I needed to have an eye test and the Eye Doctor who has several paticint's(sp)that has crohns and told me that it is not uncommon for people with crohn to have eye problems.When he got finished checking my eye's he told me that I have severe stigatism in both eye's and that the gritty feeling was a side effect of crohn's I was told that it does not effect every person that has crohns but a good percentage of people did have problems with there eye's.I now have to wear eye glasses and to top it off I had to have bi-folcal's pryer to this I had never had any problems with my eye's.If you have not been to see an eye doc you may want to see what is going on with them.When your Rheumy ask questions about why you think that you may have Lupus tell him that you done research and you have alot of the same symptoms and you feel like it would be worth looking into and if it comes back that you don't than you can rule that out and not have to worry do I or do I don't.Please let us know how it goes.Thanks
Camama, good luck with your new rheumatologist. I understand completely where you're at with the Lupus idea. I also feel a little ridiculous at times even suggesting it to my rheumatologist, but from what I've read it is not out of the realm of possibility. If you have had a strong positive response to the plaquenil, that is something the rheumatologist can use.
People with lupus often don't have the classic symptoms (i.e., butterfly rash). In fact, many people are diagnosed with lupus incidentally. They had a problem with their kidneys, or lungs, and then they were dx with lupus. Also, if you have the beginnings of mctd, you will probably never test positive for the specific antibodies in SLE, but will eventually test positive for the antibodies unique to mctd (I believe it's anti-rnp). My mother did not test positive for anything but a positive rf for years, but she was eventually diagnosed with SLE, and then MCTD. She only had a butterfly rash one time the entire time she was sick (25+ years).
I guess my point is, try not to beat yourself up about being a hypochondriac. I'm sure you're not, and your new rheumatologist will see that. Lupus is a very difficult disease to dx, and often takes many many years. Plus, even if a doctor suspects it, they're not going to say anything unless they're 100% positive. I have a friend who also falls into this category--she has had the joint pains for years, and weird enough bloodwork that her rheumy believes she could develop SLE, but has not so far (she's in her 50's now). She has been on plaquenil for 10+ years, and would never even think of going off of it. Her rheumy tells her that has Undifferentiated Connective Tissue Disease (UCTD). Personally, I think that's where I fall as well.
In any case, I'll be thinking of you and I pray that you get the answers you need from your new rheumatologist.
Great big ditto on what ElCamino said! Hang in there, and if you need us, you know we are here! DuckConfirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds - Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Hi there, appointment went well. Never brought up the eyes, we did discuss my history, he listened. He, obviously DID his homework - he knew a lot of my answers already, was well informed of my chart (which was there in FULL - so I don't know what the last guy meant when he said he 'tossed' my file and came in with 3 papers in a folder!)
He explained WHY Enbrel is a better choice than Humeria for me and WHY I may not have the reaction I had with Remicade. Still, I choose to wait until I feel more health stable. He was okay with that, but talked as if I AM going to start it soon. We'll see.
I asked about Lupus and he asked me a few questions and answered, 'it could be possible' conisidering my ANA has often been positive and my answers - I have a lab slip to get updated tests taken including an ANA test. He said that if the ANA comes out positive, then they do a whole slew of tests. If it comes back negative, then they stop right there and figure I don't have it. Well, I'll take that. He said, "it really doesn't matter what we call your condition because the treatments are all the same however, i do agree w/the fact lupus adds other factors in your appointments that we have to look for and we should try and rule it out..." So, he won my vote for now.
I don't think he has many patients yet, so I think this is a good thing for me. Hopefully, that will put me in his head long term after he starts getting busier. (I think he may just be out of schooling, residency, and such - I could be wrong, but he seemed VERY young.)
Thanks for all your support! You guys are awesome!**
Very cool... it is so relieving to find a doc that listens! Did he say anything about your liver?Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds - Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Sounds like you had a great appointment. Glad to hear he listened to you and was able to answer all of your concerns. I think having a good rheumatologist is so important. Hope things continue to go well :)
yea mama! you know sometimes it's best to be seen by "fresh meat". their minds aren't jaded yet, they're up on the newest & latest stuff, and are really looking to please.
I'm still not 100% I will EVER feel secure enough to try Enbrel...but, you can never say never.....I would just like to be able to go longer than I have w/o getting sick. My illnessess so far (knock on wood) have been getting better (not as severe) - so, we'll see.. . . at least I'm heading in the right direction.
We didn't talk much about my liver...however, he made a point to say he was going to check it on the lab slip.
I hope he continues to be a good doctor.. . I have had docs before who seem great the first or 2nd time, then blamo - they can't help you, they want nothing to do with you.
I hope everyone is doing well today. We've had some funky weather and I'm feelin' it!
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yea mama! you know sometimes it's best to be seen by "fresh meat". their minds aren't jaded yet, they're up on the newest & latest stuff, and are really looking to please.