Puzzling visit with rheumy

[Deb 27]

You know, I think most of us want to have a clear handle on what is wrong with us, a clear diagnosis. Is that too much to ask??

So, about 5 or 6 years ago, I was told I had zero negative RA by a Mayo doc. My first presentation of AI dz. was joint pain, swollen hands, pain in toes and ball of feet.  He put me on plaquenil and at times some prednisone. 

When I moved here and got a new rheumy about 2 years ago, had a lip biopsy and a SJS diagnosis. They did some hand x rays and said I had some erosions indicative of RA. Earlier  this year, I had repeat x rays that I was told by another ARNP at the office were negative!!!! So, I am figured the first mild erosions were some sort of artifact.

I saw my rheumy and a new ARNP today and they said the erosions on the last x rays this year were stable!!! WTH? I don' know what to believe and I really hate getting two different stories. I had it in my head that the erosions were perhaps an artifact and    then just put them out of my mind until today. So now, I have to worry that I might have sero negative RA as well.  It makes more sense to me but I just had all the on again off again with these erroneous reports. Ugh!!!!

[Judie P]

It is times like this that we wish we had a sister or mother that was a doctor or nurse to look over the reports.  If we understood the reports, we would know what to believe.  I feel your frustration.  I hope your house in GA is okay.  Hugs!

[Deb 27]

Thanks Judie!   It's been a rough week. I got a UTI on Wednesday and have felt lousy. Now this. What are we supposed to believe??  This drives me nuts. Yes you have it, no  you don't,  yes you do.... Ugh!!!!!

Thanks, for the well wishes. I hope things are ok too. I don't think the peak flooding is quite there yet.  There has been a lot of flooding from this storm.

Have a good weekend and fun with the cemetery work!! That sounded strange, didn't it?? I know the families appreciate the hard work you've done on this.

[Bigleyj]

Honestly sometimes i think they just don't know why some things happen and instead of saying that they just make things up about what it could be.

I've had that before too. Very frustrating!!

You just gotta keep smiling.

Jo 😀

[Deb 27]

Jo, I think you are right. It's so frustrating to get so many conflicting opinions. Not the best health care at all. We deal with enough, we don't need this.

[Jasper]

If I were you, I would get copies of all of those X-ray reports, every X-ray that you have ever had. The reports will tell you exactly what the radiologists saw on the X-rays and their interpretation will be detailed.

If you had erosions at one time you most likely still have them. They don't go away.

You cannot always rely on what your doctor says. You need the actual reports from the radiologist.

Often the doctor you are seeing (or anyone of us is seeing) picks and chooses what he/she wants to tell us. They often omit things that were stated, water reports down, misinterpret what was stated, or just plain don't want us to know what the report says. If they don't think it is important, then they don't tell us about it even if it is a problem. Or, they don't want to "scare us or make us worry." Or, they plan to do nothing about the problem so they don't tell us we have a problem. If we knew about the problem, we might want them to do something about it.

BTW, this goes for lab tests and other diagnostic tests also. We should have paper copies of every lab test and every diagnostic test we have so we can see for ourselves what our lab results and test results are. Then, if the doctor does not follow up on something abnormal, we can pursue it ourselves.


This is a side track from your question but I just wanted to mention this. If you have RA, sero-positive OR sero-negative RA, then you qualify for any of the drugs that treat RA ..... Methotrexate, Enbrel, etc. You also qualify for Rituximab. So, even though nothing is approved for treating Sjogren's Diseases, you can still receive the drugs (for Sjogren's) because you have a diagnosis of RA.
Keep that RA diagnosis if you can because it can get you better treatment than a Sjogren's diagnosis will get you.

[katie1111]

I am a retired nurse and, honestly, I have problems reading, understanding and sorting out the labs, reports and opinions.  Remember, not that much is known about autoimmune diseases and opinions vary.  Sometimes I think of it as the latest "best guess."  I have actually received from specialists opinions such as "What do you think I (the doctor) should do", "You are beyond my expertise" and this from a doctor reviewing what had been done recently "some doctors feel as if they must do something and end up doing too much." I had I one who got mixed up in her report as to which side my symptoms were, quoted facts I hadn't stated and told me all my symptoms were in my head and I need counseling.  I told her that I didn't need counseling, I needed a diagnosis.  She then said, "You need counseling to deal with the fact you don't have a diagnosis.

So, hang in there, take a deep breath and keep asking questions.  Along the way, you will find doctors who can help.

Katie