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?

I'm so very confused. I was diagnosed with UCTD 2 years ago, which eventually shifted to lupus. This summer, I moved across country, and have been working on setting up my new doctors.

Today, I had my first appointment with a new rheumatologist who more or less thinks everything is all in my head. He started by asking what symptoms I had that made my doctor diagnose me. My brain is not working so well lately, so of course I wasn't the most articulate, and also, I don't remember necessarily what it was like then, because it's different now, and because I'm not the one who diagnosed me! Still, I tried to explain what's been going on these days, and the symptoms I had then, but of course they can all be explained by so many other things. Also, the doctor said that a positive ANA or even a high positive ANA mean nothing to him because labs are unreliable.

Neither of us can contact my previous doc because she's on vacation until the end of next month.

I lost it - had a complete breakdown. I've been so confused all along, and so afraid that everything is all in my head. I used to ask my doctor if it was for real, and not in my head, and she said that yes, it was for real, and so I started to rework my life around this.

Now, here's someone who thinks I'm bipolar, of all things (I have major depression, but I'm nowhere near bipolar), and the part of me that has been doubting this all along...it all comes back, all the things people have said, and the looks I've gotten when I have told others, coworkers, how I feel or that I'm sick...

I imagine this has happened to other people. How do you know what's real? How do you handle such situations? I don't want to doctor shop until I get someone who tells me "what I want to hear." I don't think it's awesome to have lupus. I've just been living my life with lupus, or so I thought, and now...I'm just crazy?

This has been my experience most of my life -there's nothing wrong, you're just mentally ill - so it's very, very painful to deal with now. Especially since it seemed I had just begun to really separate my depression from my lupus, and had come to the conclusion that, depression-wise, I've been doing much better than I have done in years.

What should I do? Help!

ps - he also said he thinks that some of my symptoms are due to Hashimoto's, which I have been diagnosed with (right before UCTD - endo ran the ana and sent me to rheumatologist). My bloodwork for thyroid has always been normal, even when I've had symptoms. My endo says that my positive ana is not due to thyroid autoimmune disease (maybe because it was too high, or because he felt certain of the UCTD/Lupus diagnosis?). Even typing this, though, I feel like I'm building a case, and that makes me wonder if this doctor is right, and I have all this invested in "having lupus," and if maybe I'm just taking advantage or something. Yuck. But yeah - someday, my body will kill of my thyroid, but it hasn't done so yet.

pps - I just want to feel better. I need to know what is going on with me so I know how to treat it! Don't I? Or do I not? O...ow...now I am very depressed...

ppps - The doctor wants me to cut Plaquenil down from 400 to 200. I'm fine with this, since I am on far too many medications. After I saw him, I decided to stop it all together and start laying out! I've since calmed down, but I do wonder whether I should just stop the Plaquenil so I might get a real answer? The doctor said not to stop it all together, since he still considers my having a connective tissue disease to be within the realm of possibility.

What is the point of seeing a rheumatologist, if it's going to be this way?
 

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Hello!

I'm so sorry for what your new rheumy has put you through! Certainly your previous rheumy was not off base for TWO YEARS. Personally, I would be on the hunt for another rheumy. I also had a rheumy (for two visits) who said every lab but the one he likes is unreliable, and then he my positive ANA from that lab as false positive. And since when does a rheumy diagnose bipolar disorder?????

Advocating for your own health does not mean you are shopping for a diagnosis. You know your situation better than anyone, and you need to act on your instinct. If you feel in your heart something is wrong, then seek out someone who can help you get to the bottom of it.

Good luck!

Terri
 

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Oh Dear :worried:

Im really sorry that this cretin has sewn those awful seeds of doubt in your head. But thats exactly what he has done. Please dont allow his totally unprofessional comments to make you get even sicker. I can understand your first reaction about stopping the meds but you may very well bring on a major flare and it could take a long time to recover from it.

Hang in there until your first Rheumy gets back and hopefully after he has contacted her you will be able to look this doctor in the face and tell him exactly what you think of him :mad: Although mind you any doctor who says that lab results are 'unreliable' in such a dismissive way is to be avoided at all costs in my opinion.

Just remember - you didnt diagnose yourself with Lupus - your specialist did. You didnt prescribe yourself your medication - your specialist did. If your current specialist is saying he thinks you dont have Lupus then he is actually fundamentally disagreeing with your first Rheumy's professional opinion. Unfortunately you are the 'meat in the sandwich' while all of this is going on :hugbetter:

I dont think I am explaining myself very well. Its early morning here and I couldnt sleep so I logged on and saw your post. Im still a bit tired.

The bottom line is that you need to believe in yourself and try not to let this man's insensitive and unprofessional comments (about your depression) get into your head. He has absolutely no business commenting on your depression let alone re-diagnosing you with bi-polar! He is positively bad for your health. Dont let him win. He doesnt have to live your life - you do.

Much strength to you and I hope you find someone far better and more caring. Believe in yourself. You seem like a very rational individual to me.

Luv n stuff
Joan:rose:
 

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Hardcandy,

I am so sorry that this happened to you. I would run and find another Rheumy doctor and i would never step foot back in that office.

Here is my opinion based on my past experience. I was also told years ago that things were all in my head. I was given the dx of Fibromyalgia and sent on my way. Then things escalated and now I had Chronic Fatigue Syndrome too, but the doctor still felt most of it was in my head.

Then in 2005 I went blind and long story short I got a dx of Multiple Sclerosis. You see how the picture is becoming more clear here don't you.....anyway I always knew in my heart that I did not have MS.

Just last week I got the dx of Lupus and all of this time that is probably what it was and yet doctors will sometimes tend to think that things are just in our head until eventually a disease process rears its ugly head very clearly in our blood test results.

I went back to this doctor, the idiot and needed to let him know that he was nuts, not me and that in fact none of this was in my head but instead it was very real.

Do not let this doctor get under your skin. Simply find one who will work with you and not against you. You my friend know your body better then any MD so push forward and get the help you need.

Sending Hugs and warm thoughts your way.:wink2:
 

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Mildly stricken; blue
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Discussion Starter #5
Thanks all for your thoughtful replies! I will do my best to not let it get to me anymore than it has! Thanks for your feedback, too, because sometimes, often, I do wonder if it is just me being crazy. You're right, though - my other doctor did diagnose me, and she's one of the best doctors I've ever had, so she couldn't have been that far off for so long.

Still...it's hard, because I have so been looking forward to finding someone new to work with, and have many questions about what might be going on with me, or how to treat symptoms, etc. And, I so easily fall back into the doubt. It's so helpful to have your support, and to know that others have experienced similar situations.
 

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The problem is, when blood work is not unequivocal, is that a lot of it relies on opinion. So what one doctor may call lupus, another may call something else, or even nothing at all, which makes it really really tricky for the person that it is happening to.

I think that the only thing that can be said with 100% certainty is that you still have whatever you had two years ago, but that your last two rheumies have differing opinions about what that is. Going to a doctor is so often about literally seeking an opinion rather than confirming a fact.

I consider myself to be very blessed to have such unequivocal bloodwork, and really feel for you in what you are going through.

The key thing to me is not so much what a conditioned is called, but whether or not your symptoms are being adequately treated. A name is nice (even REALLY nice), but symptom treatment is essential. If you feel that your symptoms are not being adequately treated, then I think that finding a new doctor is justified if you can't work it out with this one.

but if it is just about the name, then I really understand your worry about doctor shopping. Occaisionally I get into the situation when I know that if I go to one of my doctors they will give me ABC advice in terms of treatment of a particular symptom, but if I go to another of my doctors I will get XYZ advice about the same symptom, and which is right ? Heck if I know, I might be an informed patient but I am not a doctor so it is very tricky.

Sorry, no real advice here, but I do feel for you in your situation. Give yourself a while to lick your wounds then see where you need to go from here

best wishes

raglet
 

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Hello there,

I don't really know what to say other than I really feel for you. I think that after so many years (in many cases) of not finding out what's wrong and doctors implying that we've dreamt it all up in some weird desire to be ill, most of us are afraid someone will suddenly turn around and undiagnose us.

I would be absolutely furious with the doc. Not for his/her difference of opinion as everyone's entiteld to that, but for the way it was handled. I'm afraid I too would feel extremely uncomfortable with such a doc and would be dreading each upcoming appointment. That said everyone deserves two chances and I'd also wait until your old rheumy gets back and see what she can do to help.

Also, unless you are very very well for the moment, I wouldn't be cutting plaquenil at all until you have had a second opinion. You may well be on far too much medication - I think we all think that - but plaquenil is honestly the one that probably shouldn't be cut and it the least "harmful" of the lot.

hugs to you :hug:
Katharine
 

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hi ive had lupus for 30 years and when i moved from scotland to england i got a new rhrmy he took tests and told me i dident have lupus.i went mad i just walked out of his office in discussed with him because i new i had lupus i was diagnosed in scotland by a proffesor.later on that week i got a letter saying he was proffoundly sorry.he dident see me again i saw his understudy..too emmbarest i suppose....but ive heard you have to be flared up when they take blood tests to make adiagnosis..i dont know if this is true....bridie
 

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I have very few fears in life but at the head of the list is what happened to you: being un-Dx'd. My MD has retired and passed me on to another younger chap whom I wil see in a month or so and frankly I am scared silly that I will have your devestating experience.
You have all my sympathies. I hope you can find a better MD!
Pax,
Douglas+
 

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I'm basically new here,learning what is like to deal with this disease.
Just because you couldn't articulate well when you speak your doctor couldn't say you are bipolar.By the way there is nothing wrong either with that.Just another neurotransmiters problem.
If you were in treatment as I've read here the labs maybe gave the new doctor a new perspective.If you stop the meds you will have all symptoms again. Take care and let's know how are you doing.
 
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