What do I do next? Lupus diagnosis taken back?

What do I do next? Lupus diagnosis taken back?

Posted In: 2 Replies
  • Posted By: goodgoinggrace
  • July 26, 2010
  • 10:08 PM

I am frustrated and don't know what to think any more. My doctor, who originally diagnosed me with SLE has retracted my diagnosis... Last year she did say that she was not well versed with Lupus and needed to do some research so I am now set up to see a new doctor on Friday but I hate to start the process all over!

After my initial diagnosis I did a lot of research and found that many health problems I always knew about but couldn't be explained over the years are actually Lupus related and I was releaved to know that they ALL had an explaination finally. I was supposed to see a rhumatologist at the end of last year but it took 3 months for them to get back to me with an appointment but they didn't take my insurance and by that time I was feeling better, didn't want to go on medication for Lupus if I could help it and was busy moveing so I never went.

Fast forward to this month and I was having a flare up, went to the doctor and was prescribed prednisone. It helped. A few days later I saw my doctor for blood work and a few days after that she called and left a message that it wasn't Lupus but an autoimune disease and she would write another referal to a rhumatologist. A few days later she left yet another message saying that it wasn't an autoimune disease, no rhumatologist would see me end of story. No recomendation, nothing.

I got a copy of my blood work to see what exactly she found... I have many symptoms of Lupus as mentioned above but for the sake of trying to shorten my story I'll not mention them all here, my biggest problem is fatigue, joint pain without degeration (that I do take neurontin for) and a persistant rash on my face and ears that only responds to steroid cream.

So here are my labs from last year at diagnosis: (I was tested for everything else under the sun from vitamin deficiencies to HIV - all found to be normal)

neutrophils - high - 67.4
high protein in my urine - 168
ANA - 1:160 speckled
complement C4 - low - 14
tested for ESR it was normal - 9
rheumatoid factor - negative
ssDNA and dsDNA detected

This month after being on the prednisone for a two days at diagnosis retraction:

Hemoglobin - low - 10.9
Hematocrit - low - 32.9
RBC - marginal at the very last value of normal - 3.8
neutrophils - high - 91
lymphocutes - low - 6
ANA - 1:80 (normal according to this lab)
complement C4 - low - 14 again
dsDNA none detected
smith AB - positive1.6
RNP AB - positive 2.5
sjorgrens A AB positive 2.8
sjorgrens B AB positive 0.9
Cetromere AB none detected
rhuematoid factor negative

other then start over with another doctor I don't know what to do. All the rhuematologists here require a referal from the primary care physician...

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  • Wow......I'm no doc, but I have SLE and Sjorgen's and it seems to me from your bloodwork that you do too. I have no earthly idea why they would tell you that you have "nothing autoimmune" going on with those tests. I think you need to seek out a good Rheumie. One who will see you regularly and take you seriously. My bloodwork isn't even as off as yours, yet I still maintain the diagnosis and see my Rheumie ever 6 weeks or so. Autoimmune stuff is really hard to diagnose and overlaps a bit.....many docs just don't want to deal with it. So finding someone who does can be tricky. As for your PCP.....I think leaving you a message like that is irresponsible. You can make an appointment with her to discuss why she feels you do not have an autoimmune disorder and why she won't refer you to a Rheumie, but of course you will be charged for that and it doesn't sound to me like it would be all that helpful. At the very least you deserve an explanation, not just a message concerning your health! I wish you all the best. I encourage you to keep a journal of your daily symptoms and what works and what doesn't in addition to any tests and/or treatments you go through and how they effect you. I know this can be a lot to deal with, but hang in there. It does get better. FWIW, my doc put me on Plaquenil rather than the steroids and it seems to really help. The steroids can not only make you gain weight but can leech calcium out of your bones making you prone to early-onset osteoporosis. I would think very hard about using them regularly.
    Harmonium 322 Replies Flag this Response
  • I am frustrated and don't know what to think any more. My doctor, who originally diagnosed me with SLE has retracted my diagnosis... Last year she did say that she was not well versed with Lupus and needed to do some research so I am now set up to see a new doctor on Friday but I hate to start the process all over! After my initial diagnosis I did a lot of research and found that many health problems I always knew about but couldn't be explained over the years are actually Lupus related and I was releaved to know that they ALL had an explaination finally. I was supposed to see a rhumatologist at the end of last year but it took 3 months for them to get back to me with an appointment but they didn't take my insurance and by that time I was feeling better, didn't want to go on medication for Lupus if I could help it and was busy moveing so I never went.Fast forward to this month and I was having a flare up, went to the doctor and was prescribed prednisone. It helped. A few days later I saw my doctor for blood work and a few days after that she called and left a message that it wasn't Lupus but an autoimune disease and she would write another referal to a rhumatologist. A few days later she left yet another message saying that it wasn't an autoimune disease, no rhumatologist would see me end of story. No recomendation, nothing.I got a copy of my blood work to see what exactly she found... I have many symptoms of Lupus as mentioned above but for the sake of trying to shorten my story I'll not mention them all here, my biggest problem is fatigue, joint pain without degeration (that I do take neurontin for) and a persistant rash on my face and ears that only responds to steroid cream.So here are my labs from last year at diagnosis: (I was tested for everything else under the sun from vitamin deficiencies to HIV - all found to be normal)neutrophils - high - 67.4high protein in my urine - 168ANA - 1:160 speckledcomplement C4 - low - 14tested for ESR it was normal - 9rheumatoid factor - negativessDNA and dsDNA detected This month after being on the prednisone for a two days at diagnosis retraction:Hemoglobin - low - 10.9Hematocrit - low - 32.9RBC - marginal at the very last value of normal - 3.8neutrophils - high - 91lymphocutes - low - 6ANA - 1:80 (normal according to this lab)complement C4 - low - 14 againdsDNA none detectedsmith AB - positive1.6RNP AB - positive 2.5sjorgrens A AB positive 2.8sjorgrens B AB positive 0.9Cetromere AB none detectedrhuematoid factor negativeother then start over with another doctor I don't know what to do. All the rhuematologists here require a referal from the primary care physician... You are going through what I am going through. I am the same way, I think that it is just the fact that doctors don't want to deal with it. This is something serious. It effects your life. I was told to get a second opinion. I think you should too. They have to diagnose you correctly because it can come back and bite them on there a**.
    Anonymous 42789 Replies
    • September 12, 2010
    • 10:47 PM
    • 0
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