Do I have Lupus?

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mdmcs
New Member


Date Joined Mar 2014
Total Posts : 2
   Posted 3/27/2014 9:56 AM (GMT -6)   
I am a 54 year old female who is new to the forum. I have controlled Type 2 diabetes, thyroid disease (I take Synthroid daily), and controlled high blood pressure. I don't think I'm too different from most people in that I need to lose weight and exercise. I work full-time. I'm a wife and mother to a 29 year old son and I have a 17 month old granddaughter. I have complained for years to my doctor about extreme fatigue. Within the last two weeks I've had days where it was all I could do to get out of bed after a full 8+ hours of sleep. I even missed a day of work. This is extreme, bone crushing fatigue. I've had gout in my ankle a couple of times but that has been several years ago now. My father has RA. I have occaisional mild joint pain, but that is not my primary complaint. The fatigue is my main complaint.

I see a dermatologist usually 3 or 4 times a year for what we call my "stress sores" on my scalp. Over the last few months the same kind of sores have begun popping up on other parts of my body - my stomach, one of my breast, my lower legs. My dermatologist injects the sores with a steroid (I know, it sounds bad but it really isn't!) and at my last appointment gave me a shot of Kenalog (sp?) since the sores were popping out everywhere. The sores on my body have dried up, but the sores on my scalp generally take a long time to heal.

This is a long story, so I'll cut to the chase and get to my primary concerns today. Upon the advice of my dermatologist I requested that my internal medicine doc do lab work to test my ANA levels. She did. I tested positive for ANA and SSA. I just found out yesterday from the rheumatologist that this is actually the second time I have tested positive for ANA and SSA according to my records. No one had told me that I had even been tested for ANA and SSA, let alone that they were positive. Also, the rheumatologist stated that I would always test positive for ANA because of my thyroid disease. Is this true? No one had ever told me this before. Also, even with two SSA positives she never once said the word Sjogren's Syndrome. I kept waiting for her to, but she didn't. I asked her specifically what my lab numbers were and she told me that the numbers themselves didn't indicate a worse or less severity. If you are positive, you're just positive no matter what the numbers are. I came away still not knowing my numbers.

I'm not happy with this rheumatologist (it's the second time over a course of three or four years that I was referred to her). I requested a referral to a different rheumatologist but my internal medicine doc really wanted me to go back to her so against everything my instinct was telling me, I did. I called this morning after yesterday's appointment and insisted upon being referred to a different rheumatologist for a second opinion. I felt that the rheumatologist yesterday completely dismissed my symptoms and instead of threading them together to try and come up with possibilities of what it could be she seemed determined to conclude that it just didn't add up to Lupus.

Am I over reacting? Can anyone confirm that what she told me yesterday was correct or not? I don't know why I feel guilty about asking for a second opinion, but for some weird reason, I do. Any advice would be greatly appreciated from those of you who have been down this path before.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 3/27/2014 10:19 AM (GMT -6)   
Yes, a second opinion seems to be in order! No reason to feel bad about it -- if you thought your car tire was bad and a mechanic said it was fine, but you still had nagging doubts, would you feel guilty checking with someone else?

When you see a 2ond Dr, I'd just give them my symptoms and test results -- don't share a lot about what the Dr already said or about what you think it might be. The goal is to let the Dr figure it out without adding any bias to the info.

What you want is someone to address the symptoms -- it doesn't matter so much what the disease it. There are many auto-immune disorders with overlapping symptoms, so while you may have Lupus and/or Sjogren's, it is also possible that you don't have either! Let the rheumy do the work, don't limit their thought process.

Meanwhile, Lupus is diagnosed by having 4 or more of the 11 symptoms (see diagnosing lupus link below). Sjogren's is usually diagnosed by either a lip biopsy or an eye wetness test (sorry, forgot it's name). But if you don't have dry mucus membrane issues I wouldn't worry too much about it. (Typically dry eyes & mouth, or maybe ears & nose, maybe dry vaginal tissues.)

Hang in there! My overwhelming fatigue was first addressed with plaquenil (slows Lupus progression), prednisone (controls inflammation), and a sleeping aid. Sometimes we need a sleep study - some of these illnesses the fatgiue is associated with not getting deep restorative sleep, which we don't even know we are missing.

Seek that 2ond opinion, let us know how it goes. Keep searching until something is done about the fatgiue!!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

mdmcs
New Member


Date Joined Mar 2014
Total Posts : 2
   Posted 3/27/2014 10:22 AM (GMT -6)   
Thank you so much Lynnwood!

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/27/2014 10:33 AM (GMT -6)   
I agree, hang in there and absolutely go for that second opinion. There are some fantastic rheumy's out there who will give you some answers and work with you.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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