View Full Version : Second Opinion-not lupus

06-01-2009, 07:33 PM
I went for my second opinion today. I have to say the doctor is MUCH better, he actually examined me and listened to my questions and concerns (such as taking prednisone and Imuran so early on).
He feels that I do not have enough of the markers to diagnose me with Lupus. The ANA was positive, but at a low titer. The dsDNA was positive with a low titer, as well. He told me that the dsDNA is specific for Lupus, but there can be false positives.
He told me to stop taking the Prednisone right now, which I am THRILLED about! I am supposed to go back for another ANA and dsDNA test in 3 weeks. Then I see him in 4 weeks to discuss the results. If the titers are still low, then he will start to investigate other problems he suspects (some weird thyroid thing that I can't pronounce, fibromyalgia, etc). If they go up, he will do further workups for Lupus.
He's doing a workup on my kidneys, too since I've had kidney stones. Apparently that's something that my urologist should have done. I had a 6mm stuck in December that they had to ESWL out, another 2 and 4mm came after that one. The doctor said that the stones could be indicative of a kidney problem or something causing a calcium issue.
Here's the real problem I'm having right now. He has prescribed me with Xanax and Zoloft. He said that I'm "preoccupied with bodily functions". Yes, it took me a minute to take that in. He explained that he thinks it's me feeling something more than a normal person would. This makes me wonder if he thinks I'm a hypochondriac. That's exactly why I avoided going to a doctor for a year over these symptoms. I don't want them to think I'm crazy or making things up. I've heard of somatization Disorder, I wonder if that's what he thinks I have.
After the appt, I realized that he might not have understood that the numbness/tingling in my leg is always there, it doesn't go away. I think he thought that it comes on with stress. Big difference. Dude, I can't feel my leg.
So, I'm on Xanax and Zoloft for 3 weeks. It will take about 2 weeks to see if it works. Honestly, I'm one to retreat if something doesn't feel right. I'm really unsure about this, just like I was about the Lupus diagnosis. I keep thinking that this guy thinks I'm a nutcase. I am not going to just keep seeing doctors, that's not what I want. I'd just like to know why I feel like I'm 80, what the strange spots are on my feet, why I can't feel my stinking leg and why I can't play with my 3 year old like all the other mommies!
Sorry for rambling, it's been a roller coaster of a month. Right now I feel like I'm at the bottom. I really don't want to take meds or anything, just go back to doing nothing and pretending it doesn't exist. If I ignore it, will it go away?

06-01-2009, 08:42 PM

Humm...I don't understand the anxiety and anti-depressant drugs? Even for fibromyalgia from my reads...doctors may prescribe amitriptyline to help promote sleep. Prozac in combination with amitriptyline is effective in some people. Cymbalta may help ease the pain and fatigue associated with fibromyalgia.

I had concerns about your prednisone and Imuran from your earlier posts...remember I was asking about dose..kidney involvement and etc...

Hypothyroidism? He should have done a blood draw and looked at your TSH levels and thyroid hormone thyroxine....did he say why he wasn't? Was it to let you system have time to clear itself of previous drugs?

How long were you on the prednisone and the dosage? Was it a taper dose packet? Was it a set mg per day? Usually one has to be weaned off...you can't just abruptly stop. When you take prednisone for a prolonged period, your adrenal glands stop making cortisol. After you stop taking prednisone, your adrenal glands need time to resume their normal function. If you abruptly stop taking the drug or taper off too quickly, you will develop symptoms of prednisone withdrawal...aka... as cortisol deficiency.

Preoccupied with bodily functions...seems like a different way of saying it is all in your head.

If it was me, and I had questions, I would call his nurse tomorrow and pose the questions to her to ask the doctor...and she should return your call or the doctor will at the end of the day...or make another appointment.

Ask him what he meant by preoccupied...ask for the medical term. Ask him how the drugs he prescribed will provide relief from his diagnose...

If you have Lupus or any other illness, syndrome, disease..ignoring it will not make it go away...That would be lovely if we could..we dream of days like those..

Sleep well...hugs,

06-02-2009, 04:09 AM
Thank you, Oluwa. I have not been able to sleep because of this. I, too, feel that he thinks it's all in my head.
The worst part about it is that the blood tests are the only thing coming up remotely positive to back me up. At this point, he's throwing those out. I can't say I blame him.
For the thyroid, I have a previous thyroid test from 2 months ago showing elevated tsh and lowered something else (forget what it is), my pcp diagnosed hypothyroidism and put me on synthroid. I requested a super small dose, if any so that we could keep a control during the diagnosis process of these other symptoms. So, I'm on the smallesst possible, I'm not sure if it's doing anything.
The prednisone didn't worry me at first, but then I read your posts did research on it and WOW. Something I don't normally like to do, but like I said, it worried me. Since I've had kidney stones in the past, the Imuran REALLY bothered me. It is not a taper pack, it's just pills in a bottle.
I'm glad you think calling the office would be a good idea. I was just thinking of doing that.
Unfortunately, ignoring it was going so well. Right now I'm feeling so angry and depressed because I actually told three doctors about these symptoms. Now one has actually come out and said (without saying) "you're crazy" and given me the meds to back it up. That's what I was really worried of, hence me wanting to refuse going to doctors again.
With my kidney stones, it took the 6mm getting stuck for 2 weeks and severe life-threatening problems to get me in to the dr. I really think that's what it's going to take to get me back in for anything again after this. I can't take doctors looking at me and telling me I'm "preoccupied with bodily functions".
Thanks again for your reply. You are always so insightful!

06-02-2009, 04:38 AM
I agree with oluwa, you need more answers to why your taking those drugs. i would also again seek another opinion. you don't need to have high numbers just a little over is enough. keep us informed good luck:yes:

Angel Oliver
06-02-2009, 04:48 AM
Yes i too would give the doctor another call to clear up a few things too.I was on Amitryptaline,but in my case it was used as an anti inflammatory as my jaw was so swollen and painful.In a higher dose,its used as an anti depressant...if that helps.But i had to stop it as i stopped peeing and got a water infection.But it may not happen to you.I just have to look at a pill box and i swell up :) You keep strong...write down the points you want clearing up...talk talk n talk till he hears you.


06-02-2009, 06:38 AM

Something doesn't sound right with your new doctor. Oluwa is right, you just can't abruptly stop prednisone. And I was prescribed Zoloft once and was told by my Dr. at the time, and I read from the manufacturer of the drug itself, that most people will start to feel the beneficial effects after 3 weeks. So your Dr., who I am assuming is not a mental health specialist, prescribes you a drug commonly given for depression and panic disorders and is going to have you stop taking it just when it is supposed to begin working?

Have you been diagnosed by a qualified mental health specialist with depression or a panic disorder? If not, I don't believe this Dr. has any business giving you a drug for a condition he is not qualified to diagnose you with. And the Xanax, it's a short acting, fairly potent and potentially addictive sedative (ask me how I know). Do you really think you are so stressed out that you should take this? If you do, the drug certainly can be helpful, but if not, ask yourself why the Dr. prescribed them to you.

You know, I'm pre-occupied with bodily functions because I'm sick and in pain alot. And, I feel a need to be "pre-occupied" because if I don't pay attention to my symptoms, a problem could get away from me to the point where I could have serious, irreversible damage to my health. If you are having physical symptoms, anti-depressants and downers are not going to help. I really hope you don't have Lupus, but you need, and deserve answers. Trust your instincts, you know your own body, and if something does not feel right, it probably isn't. I hope you can get off this rollercoaster, I've been where you are, and it's no fun.


06-02-2009, 08:07 AM
So, what do you think I should do? Go see another doctor? I don't want to bounce around seeing one after another. My ANA is essentially negative since it was a low titer, yes, I agree. It's that dsDNA coming back at 13 with a 10 indicating positive (5-9 is indeterminate).
I'm confused and frustrated.
Rob-to answer your question, yes, I am a stressed person. I'm not sure I'm stressed out enough to need meds. My coworker has anxiety disorder and SHE needs meds. I'm not sure they are that necessary for me.
I really, really don't know what to do.

06-02-2009, 11:20 AM
you need to go see a mental doctor not a primary care doctor they can't describe anti depressants in the way people need to be tested for its just a quick fix to them and can cause you serious side effects. i also think you should see a rhemy, about your blood test or and internists not a primary care doctor. even if the number is low it still came out on the test as a flag which means something it wasn't a normal test results just the numbers weren't high correct?

i hope you don't have lupus but you need to know what you have and all meds take time to get in your system and to get out of just can't start and stop the meds you were on.:yes:

06-02-2009, 11:50 AM
Hi Sheperd girl...

An ANA is positive regardless if it is in the low range of the positive marker..now if it points to Lupus that is a different thing all together. Nevertheless it is positive. And if it is a 'false positive' has he run other tests to indicate the results are indeed false...

You have two tests that point to an autoimmune disease...I think a doctor should rule out what it isn't first before they make a diagnose that it is Lupus or all in your head..though the later, we know isn't true..all in your head

Did you call him and asked why he prescribed the Xanax? It is a very sedating drug especially if taken when not having an actual anxiety attack…seems to me he just wants to sedate your thoughts and not treat you because he believes you are not physically ill…which comes full circle, why the positive antibodies tests…

Did you ask the first doctor why he diagnosed you with Lupus, clinical findings, family history? And why did he prescribe the more potent drugs and why Plaquenil wasn't adequate. I don't know how long you were on it, if you were...if you have been dosing with it, was it working or not?

You mentioned in another post you workout with X90…that is an extreme, insane intense workout DVD…I have it, use to do it…5 years ago. Heavens, I couldn't even do one lunge or punch now. That could be aggravating your symptoms and maybe prednisone and Imuran isn't warranted...

To me, from your posts neither doctor seems competent. One does an over kill and the other is off on a tangent...Only you can decide which doctor to chose or chose another.

Lupus is so individualized..your pain may feeler stronger to you than another. You may not want drugs for yours but the other may.

I think the doctors should continue to rule out other diseases..and one doesn't have to have a hard diagnose to receive proper treatment...

Both doctors can be right and wrong. The second doctor to me shouldn't have stopped your steroids abruptly. He seems on course of investigating your symptoms further, but to me the drugs were wrong and the first…why the big guns without further investigation…hummm.

Just things to ponder to help you decide.

Enjoy this day..I am…I went swimming, yeah!

06-02-2009, 11:55 AM
hi shepardgirl,

i agree with every one else....something does not sound right. Your dr is not tapering you off prednisone, he is putting you on seriously strong drugs for something he is not specialized, and he says you are "preoccupied with bodily functions." (i don't even know what he means by that).

Also, you said your urologist was supposed to check your kidney function. I am seeing a nephrologist for this, he is checking my kidney function every 3 months. I think you should check into seeing a nephrologist, the urologist is not the appropriate dr. for kidneys.

like everyone said, only do what you feel is right....if you are concerned about these meds, then hold off on them until you find another dr. I know it is a royal pain to start over, but confidence in your dr. is crucial, so keep looking....there is a good one out there.

06-02-2009, 02:40 PM
I called the doctor's office and left a message with the nurse to find out what exactly he meant when he said I was preoccupied with bodily functions. I'm sure he'll get a good laugh out of that one!
Oluwa-I am doing P90x off and on, not as a strict regimen, but certainly enough to stay in shape. I do a boot camp workout with some coworkers at my school the rest of the time. I feel quite a bit better when I do the workouts, especially the YogaX. I'm thinking of doing more Yoga this summer while off of work, fun!
As for the first doctor, I haven't even called him. I get frustrated when I talk to him or his office staff. I really want to approach him now that I've done research and talked to you all about the meds. Was he trying to screw me up? What was his motive?
This is where I get nervous. Trying to find someone that can treat me and find the problem, not cause more. My friends and family think I'm making up these diagnosis' and are wondering why the doctors don't agree. I'm not telling them about anything and people are wondering why I am staying so quiet about it. I really don't want to have to tell and untell everything all the time.
A nephrologist sounds like a reasonalbe person to see for the kidneys! I haven't even looked up any. I also need to see a dermatologist for the weird spots popping up all over my legs and feet.
Sounds like it will be a summer of seeing doctors. Unless I decide my previous course of treatment, which was to ignore it. That sounds much more relaxing.
Thanks for all your help and insight. So glad I have a place to come and ask questions. I'm not sure what I'd be doing now otherwise.

Betty Boop
06-02-2009, 03:32 PM
Hi, I was told I likely had a lupus-like reaction to an antibiotic. I have all of the symptoms. The doctor told me today that once all the antibotic is out of my system I should be fine. I could not get him to take seriously that I have been suffering for two years. His response was that my ANA titer was borderline, some type of protein was positive. He says something is going on, but he doesn't want to call it fully lupus, just a lupus-like reaction. I am having severe burning in my joints and muscles, I am retaining fluid, am very red and flushed in the face, neck and chest, and have swelling about my neck, across my clavicle and into the top of my shoulders (all new symptoms). He says for me to come back one month - to take no meds whatsoever. I suffer from severe headaches and am not looking forward to that next episode. He says headaches are not related to lupus. It turns out I have gone hyperthyroid after being hypothyroid for quite a while. He has reduced my dosage. Just can't believe yet another delay in moving forward. I certainly empathize with you. Keep asking questions, I am. I'll let you know if I get any better information. Betty

06-02-2009, 06:31 PM
hi betty, well, this is a new one "lupus-like reaction to antibodies". I am wondering what in the hell he is talking about.

06-02-2009, 06:52 PM
Got a call back from the doctor, well the nurse called with his response.
He said that he noticed that I am an anxious person (I pick at my fingers, nervous habit, done it all my life; my blood pressure was also elevated) and that the Xanax and Zoloft would help calm me down. I asked the nurse to ask him what he meant by his comment of being preoccupied by bodily functions. She said that it was all about me being an anxious person, not b/c it was all in my head. She said he told her that he didn't think "anything bad of me or anything".
He said I can take the Xanax if I want to or not at all. He'd like to see me take the Zoloft. That led me to the question of, "are my symptoms being caused by the anxiety". His answer was that he didn't know at this time, but maybe.
Kinda makes me wonder.
I have several options the way I see it.
1. Do what this doctor tells me to. Wait it out, take the anxiety meds, hope they work and don't screw me up.
2. See another rheumy (that would be #3) and see what they say about all this business. I'd also have to see a dermatologist about the strange rashes I've got. Put them all together and make another decision.
3. See a mental health professional to see if there is anything wrong with me in that aspect. I'm starting to wonder.
4. Lastly, I could go on about life without treatment (no matter what the cause).

Thanks for all your replies. I can't believe how frustrating this has become to me. I really want to scream!

06-03-2009, 06:49 AM
i would see the mental health person before taking zoloft, the xanax you can take if you feel and anxiety attack, some people get heart papalutations i can't breathe hyper venlate and get the heart stuff than and only than do i take my xanax spelling is bad today. anti depressants should only be given by a train profesional not any other type of doctor. i had a friend who was givin lexapro called doctor said he was getting worse and had sucide thoughts within the week he shot himself. he went to daily mass and was best friends with all the priest in our church, busines was fine familly great, they are blameing on the meds. the dr that gave it to him was just his primary care, not mental health, so its just my thoughts.

have a great day

06-04-2009, 06:13 PM
Whatttt?? Head for the hills!! Get another opinion..I know we don't want to keep going to different doc's but that was a jerky answer. My rheumy also said a weird thing..I showed him red dots on my legs and he replied.."you know..sometimes when you don't feel well ,you focus in on every little thing that bothers you"...hello... I was trying to give details so you could diagnose me you moron!! I have an appointment with a new rheumy next Thursday...my GP is more on the ball thank God.

06-04-2009, 08:06 PM

I am stumped...Picking at ones fingers warrants a drug intervention of Xanax and Zoloft...humm..overkill. If that was a proper prescription most of the world would be on it for every little nervous twitch. Shhesh...every child that chews their nails...or one who bounces their legs or shake their foot....humm.

Elevated BP...what not BP medication? Is he planning to check your BP at regular intervals to see it you suffer from hypertension or just being nervous from being in this office, or a hot day. I am a low BP girl, ah every once in while I go above 120 but no one prescribes Xanax for it...

Though I do dose with Xanax..because now and then I get so overwhelmed with my illnesses...deep thought triggers a panic feeling within me...

Does he think you are depressed? Zoloft isn't going to change anything if,..IF you were a hypochondriac.

Questions to ask yourself...Do you think it is all mental? With positive antibodies tests, I think something just maybe going on with you....

Perhaps, seek a third opinion...it can't hurt...

Sleep well...night.

06-05-2009, 12:07 AM
Thanks once again for replying.
In order to figure things out, I had to take a step back and talk to my husband about our next move. Wednesday night, I decided I was not going to be taking anymore of the Xanax or Zoloft. Mainly for the reasons you all described (the doc isn't a mental health prof., I'm not depressed, etc) AND I felt very, very drugged up.
We had decided last night to wait it out for a few weeks and see what happens, no meds or anything. Now, I'm a little bit worried, however. For a week now, my right arm has been having pins and needles from my elbow. It's my ulnar nerve, I know because I damaged it in college (I play clarinet, keeping it bent while playing causes entrapment). None of the exercises I do seems to release it. This started coming on last Friday, it's now so bad that I can't even brush my hair without it hurting. I've also been getting numbness in my lips and tongue off and on.
My main concern is that getting off the steroids has caused my symptoms to get suddenly worse. What if I DO have Lupus and the steroids were actually working? I'm also concerned, of course, that getting off the steroids too quickly caused a problem.
I'm still stumped about the ANA with the low titer, but the dsDNA positive. It was only a 13, but it was still positive. I'm just not sure.
I think I'll call another rheumy tomorrow morning and see when I can get in. Maybe I'll find someone that is middle of the road. Nothing drastic or dramatic.

06-05-2009, 05:22 AM
I am glad your calling another doctor. its will be for the best. you and your husband seem to be on the same page and that is good, you have his support in all this mess. make sure you get copies of all your lab test in your hand when going to next doctor, keep diary of any new or old symptoms for them.

good luck we are here for you.:yes:

06-19-2009, 03:03 PM
Dear Shepherdgirl,

I do understand the zanex and zoloft drugs. See, that is exactly what the first doctor I saw said. After 8 years of the same feeling (feeling 80 years old), I too am hesitant. I have heard that most of my symptoms are caused by stress or anxiety or depression. Here's the kicker....

I have anxiety, as that is a symptom of the lupus. I have depression, prolly because I feel like poo ALL THE TIME. My days are regulated by how I feel that day. I have never been a complainer and would never chalk up a medical condition just for attention.

The thing with all autoimmune disorders are...that they are not always easily diagnosable. Which is terrible when you're in pain like me. With every test that they take...I pray and pray for definitive answers. Luckily, I was referred to this great doctor who has worked with a lot of my family members who also all suffer from auto-immune disorders. Since I have a family history, they believe me more. Sometimes, I take my mom just to have that adult authority figure. She acts as the "I told you so" character witness since she witnesses my disorder first hand.

Keep a journal. Call when you feel your worst. Sometimes its a matter of being seen when your symptoms are at their worst. Or do what I do...have a family member go along with you as a backup partner.

Good Luck with your illness!

07-03-2009, 03:06 PM
I am browsing through some older threads and came across yours. I was wondering what ever happened with the followup? Did you decide to go for a 3rd opinion?

07-03-2009, 06:24 PM

I'd like to piggyback off of what everyone else said something doesnt sound right I know u dont want to go see countless numbers of doctors but u need answers or at least something that is satisfying to u. If u are not feeling at ease or u are questioning medications or his diagnosis than by all means go find youe answer. U dont sound crazy or like a hypochondriac to me, sounds like your body is turning on u and u would like to know why. Also, I just wanted to say that a doctor had misdiagnosed my mom and gave her some anti- depressants and zoloft well it ended up making her worse off because she didnt actually need it. I really hope u get to the bottom of this and definitely keep us informed. I probably wouldnt call that doctor's office I would make an appointment with a new doctor.

I hope u dont have lupus my fingers are crossed.

07-04-2009, 11:51 AM
Thanks for checking in on me!
I actually have an appt this Wednesday with a UT Physician. He's supposed to be really good. He requested all progress notes and lab work from all the doctors I've been to regarding this condition. That includes my PCP. The first rheumy was a pain to get things from. The second one out right refused to give me anything until I faxed in a letter stating I wanted everything faxed the the office by a certain date. Just adds another reason why I'm NOT going back to the second doctor.
I'm keeping a list of all my symptoms. They are quite numerous. My finger is the latest and most strange. After taking the steroids and NSAIDs, it went down and the pain went away. Now, after being off of it for 4 days, the pain is returning. I'm just waiting for it to blow up again. Strange, huh?
I'm kind of hoping to get an answer that is definitive. Yes or no. Not a maybe or "hey, you're crazy!". I just want an answer as to what I have. I'm not going to accept the hypochondriac answer. I've done my research on that, now. I have something real going on with me and I need to know what to do.
Thanks again for checking on me. Seems that I can't just post a simple reply. It's always a novel. Why is that? One would think with a throbbing finger, it would keep me from typing as much. But no, not really.

07-04-2009, 12:03 PM

I've been following your story, and your search for an answer for awhile now. I just wanted to tell you that you have really stepped up, taken charge, and have become an advocate for yourself. You have confidence and resolve, and that's a great thing. You know something is going on healthwise, and you will not accept "hypochondriac" as an answer.

Although you don't yet have a definitive answer, I think you are well on your way to finding one very soon. Your persistence and resolve will eventually pay off, and you'll be able to stop wondering what's wrong, and start working on treating your symptoms.


07-04-2009, 03:00 PM
WOW; my heart goes out to you. I went around a bit at first, yes you do, no, you have depression, ok, take antidepresants. then one day I am fine, the next in the hospital with peularisy & pneumonia, oops, my oppologies, I was wrong, you do have lupus. I am now with the only dr. that diagnosed me right, I like him & trust him, after my last flair he has had me on 40mg of prednisone a day, just started me on cell cept two weeks ago and reduce prednisone 1mg a week to taper off,(wow, just quit?wow). Can you contact the LFA for a referal for a dr. familiar with lupus? Best of luck, we are here for you.

07-06-2009, 12:17 AM
Thanks guys! I'm really hoping this dr. that I'm seeing Wednesday can help me out. He's supposed to be a specialist in Lupus. UT physicians are some of the best in the area. I've heard great things about them. My fingers are crossed.
The hardest part is trying to avoid taking the prednisone for the swelling in my finger. I really don't want to mess up any of the tests. He will surely see an accurate representation of what I put up with on a daily basis. That should help out some.
I'll keep you updated on what I find out.