View Full Version : Confused and angry

12-10-2007, 04:04 PM
In the past 2 weeks I have been diagnosed with lupus twice by 2 different docs. Then today I got a call from my most recent doc who said now they're thinking it may not be lupus afterall, that my test results didn't show ENOUGH abnormalities. He said that it's most likely a rare variant of lupus that he has heard of but never seen before and they want me to go to some doctors conference on the 19th and be paraded around like a circus freak to see if anyone else can give us some better idea of what to call this and how to treat it. He wants to start antimalarials and steroids and treat it like lupus, but thinks maybe another doc will have seen this before and have a better idea. If not, we will just treat it as lupus though he isn't sure that's really what it is.

Anyone been through this? Any idea what any of this means? He said it could possibly be reticular erythematous mucinosis, but that it doesn't explain my other symptoms and is really just a pre-cursor to SLE anyway.

I am getting seriously sick of doctors all together and even more so of all these who keep saying, "well, maybe it's this...maybe it's that, oh we don't know, just take this and see what happens"

12-10-2007, 08:10 PM
Unfortunately, the responses that you are getting from your doctors is a way of life for those of us suffering with Lupus and/or any of the other auto-immune/connective tissue diseases that we may suffer from. It is not entirely their fault. All of these diseases have the maddening ability to mimic so many other illnesses. Also, symptoms change, they develop slowly, and they come and go. So doctors have to wait to see what symptoms show up, run new and different tests, see how treatments work and go through a process of elimination in order to finally give you a definite diagnosis. You should know, however, that there are many of us who NEVER get a definite diagnosis and we continue to be treated for what the doctors think we may have. It is fortunate that many of these auto-immune/connective tissue diseases respond to the same treatment regimines!
Because these diseases are so unpredictable and can mimic each other as well as other illnesses, it is understandable that your doctors are a bit confused. Their confusion and lack of definite answers is not due to their stupidity, it is due, largely, to the nature of these diseases. But, look at it this way.....at least they have not dismissed you and sent you home telling you that your symptoms are all in your head and that you shoud see a psychiatrist instead of a medical doctor (as many of us have had to endure). They are continuing to look at your lab results, contemplate your symptoms and discuss your case with other doctors. That means that they are working on your case continually and they want to find out what is going on so that they can help you with treatment. You are one of the lucky ones whose doctors have agreed to start treating your symptoms even though they are not 100% sure what your illness is. There are many of us who are simply dismissed, not given any treatments at all, and told to see a psychiatrist. We then have to fight for relief from our symptoms, fight for our doctors to believe that there IS something wrong with us, fight for the right to have them look at our labs, discuss our symptoms and try to find an answer for us.
So, instead of being angry, take an objective look at what your doctors are doing and try to understand that they are trying to do what they can in order to help you. These are not easy diseases to diagnose as they cannot be readily pinpointed and it appears that your doctors are trying to do just that!
Be patient....that is the mantra for all of us! In the meantime, we are here to help you to understand the process and to give you as much information as we can!

Peace and Blessings

12-11-2007, 09:12 AM
Thanks, I guess I'm just frustrated because one minute they tell me they *know that it's this* then the next they change their minds. I think the only reason I haven't been sent to a shrink is because I already see one. 4 years ago when I first started getting symptoms no one could explain they sent me there and I was diagnosed and treated for bipolar disorder which only made things much worse and about 8 months ago I put my foot down and told them I wasn't going to keep taking all these psych meds that we're only making me sicker than I already was. Turns out a lot of the symptoms were made worse with those meds and I had been doing much better physically and emotionally until a few months ago.

I guess I just need to learn to be patient. I just want them to figure out what it is and fix it. I'm tired of pain, exhaustion and uncertainty, but from what you say it sounds like that's just part of the process.

12-11-2007, 09:43 AM
Yes, as I said, it is due to the nature of our diseases. It can take up to a year to get a diagnosis (it actually took me more than a year). So, you do need to be patient and you do need to understand why your doctors are not able to give you a definite answer. Yesterday, according to these lab results and these symptoms, they may think you have this. However, as I said, the symptoms change, more develop and others go away. So, what they were sure about before has completely changed today and now they have to start all over or at least move in a different direction.
The best thing that you can do is to learn everything that you can about Lupus, or connective tissue disease (which includes Lupus). Also learn about their symptoms and how many of them overlap and how they can change, evolve etc. Learn about their medications and treatments, the side effects of those medication and treatments, and pay close attention to how they affect you. Also, listen to your body - note what occurs when you feel worse and when you feel better. Change your diet to eat healthy and try to get some form of regular non-jarring exercise. Once you become an educated patient, you will better understand you doctors and will be able to make informed decisions with them!
Be patient and become educated so that you can be your own health advocate (just as you did when you stood up to the psychiatrist and demanded that they take you and your symptoms seriously)!
Peace and Blessings

12-11-2007, 06:17 PM
My rheumatologist is doing something like that. He is pretty confident I have a collagen disease of some sort, and he thinks it is lupus, but is hesistant to diagnosis me because all of my blood work is negative, the only thing that has come back abnormal is I had a slightly low WBC, lymphocyte, and neutrophil count, but all the autoimmune tests came back normal. But he has keep telling me about something called seronegative lupus, where the blood work comes back negative. Another possibility he thinks it could be is chronic fatigue immune dysfunction syndrome(CFIDS), and after reseraching about it, it sounds exactly like me, except from what I have read, it doesn't cause inflammation in various parts of your body like lupus. and I do have inflammation from an unknown cause. It's hard not knowing for sure what it is. But my rheumatologist has put me on prednisone(for the inflammation), and has just started me on plaquenil, so I guess he is treating me as a lupus patient.
Good luck, and I hope you get answers soon!

01-09-2008, 12:55 PM
Well, I did the big doc convention and it seems they all feel it's lupus, probably caught early which is why my blood tests are contridicting each other.

I'm to start plaquinil, but need an eye exam first so we have a baseline and can watch for vision problems. Sadly my insurance hasn't paid for ANY of my diagnostic and/or treatment appts in several months so it's gonna be a while before I pay everyone off and can afford the eye exam. Both the rheum and derm have been calling me constantly hounding me to get the exam so we can start meds, but I just can't afford it. Is lupus progressive? Will it get worse if I have to wait to start meds? Or will I just deal with more of the same?

My boss hung blinds in my office for me yesterday so I'm working basically in the dark but the docs all told me not to even go out to my car without full protection from the sun, even when overcast. Even in the dead of winter my entire body is covered with this horrible rash (has been for almost 10 years and just now they connect it to the sun!!!). I think that will be the hardest part to get used to. I so love the sun. The idea of never having that feeling on my skin again is heartbreaking. I'm selling my Jeep too since I wont be able to ever take the top off again, there isn't much point.

So far all I've been dealing with is fatigue, this nasty rash and horrid pain in my hands. Really, I've had the rash long enough that it doesn't torment me too much, but my hands are getting to be too much. I have an office job and I barely make it till noon before I can't type anymore. Docs just keep telling me to take Aleve or Ibuprophen, neither of which seem to help much.

I'm pretty overwhelmed with all of this and am getting depressed over it, but I keep clinging to the hope that the plaquinil will relieve all the symptoms and that hopefully aside from never seeing the light of day again (ok, I'm being dramatic, I know) it wont disrupt my life too much....please tell me I'm right!

01-09-2008, 04:47 PM
Hi Kimmers,

The first question would be why the insurance is not paying on your medical bills. Secondly, yes Lupus can progress and Plaquenil will really help with that. I would call around to optomestrists and get quotes on what a plaq. baseline would cost. Most insurance companies will cover the baseline exams due to it is a secondary chronic medical illness due to the first issue Lupus. I would call your insurance company and see if they will pay for it.

I typically only pay 35.00 for a plaq. visit ever. If your insurance will not pay for it, would it be possible to get the exam and then make payment arrangements with the optometrist? Do you have a pre-tax cafeteria plan? Another suggestion is to figure out your medical costs, prescriptions, dr visits and have it taken out of your paycheck pretaxed. You then submit the bills and get reimbursed.

I hope this helps you out. Keep us updated and take care.


sick n tired
01-15-2008, 11:50 PM
hey Kimmers,

I agree that this is going to be an adjustment not going in the sun. I live down in Texas and most of the year it is warm. My mother has said that Texas is over the blow holes of he**. Even our winter is pretty mild. The big news today is that it "might" sleet today. "

I also had years before any doctor connected the dots to find that I had sle. It was "all in my head" until recently. So I do understand your frustration.

My insurance doesn't pay for my eye exams either.

Have a great day,


01-18-2008, 12:25 PM
I am in shock about your insurance not paying. I thought in this day and age we were better protected from insurance tactics. I'm with the others: why are they not paying? You do not need the stress of worrying so over the bills - you have enough to deal with.
Also, for getting the eye exam in the mean time, get to Salvation Army ASAP. They usually have emergency funds for such things. If your docs want you on Plaqunil, you have an emergency need there! (I am a big supporter of Salvation Army - they helped me a lot in my early days, and later I volunteered with them in the office during holiday times. Plus, they have one of the lowest "overheads" of all the assistance agencies - ie: more of the funds go to help people)
I can feel your pain about the hands. That has always been a biggie for me, too. I was a nurse, and the loss of my hands devastated me! Even now, I have been at the computer for a good while now, and I am aching a lot! Gentle rubbing helps me, plus pacing out the activities that require lots of hand motion. Are there other things you can do in between the high intensity hand activities? (phone calls, reading, etc.) I find it harder to "get back" my hands, if I push to the point of real pain, rather than do some, rest, do some, rest, etc.
Prayers and warm thoughts from the rain country!