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I am completely deflated this week.
A year ago, after 2 yrs of not being able to use my elbows (bending, lifting, etc felt like they were on fire with stabbing pain), then my ankles began making it impossible to walk, my doctor ordered some blood tests and I had a positive RNP. The ANA was negative.
My doc said I had Mixed Connective Tissue Disease. The lab work report had the same comment on it - MCTD. So, he put me on Prednisone and within 14 days, my elbow pain was gone and I could wear shoes again. Yay! Right?
2 years have gone by. Almost every symptom I have/had falls under Lupus/MCTD: Light sensitivity. Joint Pain. Extreme Fatigue. I am dealing with a problematic nerve in my neck that has paralyzed my right hand and weakened it.
So, I was sent to a neurologist...good doc so far. He sent me in for an MRI and a comprehensive lab work for Lupus.
The MRI results, I get tomorrow. The blood work came back Negative on all markers. No more positive on the RNP. Neg on ANA, dsDNA, etc.
So, I am lost and confused. How can I have MCTD/Lupus a year ago and be treated pretty darn good on the steroids; and, now, I have no markers?
I think I'm crushed. Spiritually, Physically and Mentally. I was able to combat a disease after dealing with the pain for so long and now...I'm back to being 'a faker.' Yes, 8 doctors told me I was: 1) Getting old (I'm 53), or 2) faking my pain for pain pills (which I already had).
Any input would be GREATLY appreciated. I think I'm at the end of my proverbial rope.
Thank you for your time.
A year ago, after 2 yrs of not being able to use my elbows (bending, lifting, etc felt like they were on fire with stabbing pain), then my ankles began making it impossible to walk, my doctor ordered some blood tests and I had a positive RNP. The ANA was negative.
My doc said I had Mixed Connective Tissue Disease. The lab work report had the same comment on it - MCTD. So, he put me on Prednisone and within 14 days, my elbow pain was gone and I could wear shoes again. Yay! Right?
2 years have gone by. Almost every symptom I have/had falls under Lupus/MCTD: Light sensitivity. Joint Pain. Extreme Fatigue. I am dealing with a problematic nerve in my neck that has paralyzed my right hand and weakened it.
So, I was sent to a neurologist...good doc so far. He sent me in for an MRI and a comprehensive lab work for Lupus.
The MRI results, I get tomorrow. The blood work came back Negative on all markers. No more positive on the RNP. Neg on ANA, dsDNA, etc.
So, I am lost and confused. How can I have MCTD/Lupus a year ago and be treated pretty darn good on the steroids; and, now, I have no markers?
I think I'm crushed. Spiritually, Physically and Mentally. I was able to combat a disease after dealing with the pain for so long and now...I'm back to being 'a faker.' Yes, 8 doctors told me I was: 1) Getting old (I'm 53), or 2) faking my pain for pain pills (which I already had).
Any input would be GREATLY appreciated. I think I'm at the end of my proverbial rope.
Thank you for your time.
I guess all I can say to you about they way you are being treated is that although doctors think they know everything, they don't. Many docs are very short on compassion. If they are treating you badly it says more about their humanity, than anything about you.
Is the doctor who treated you for MCTD one of the docs calling you a faker? If he was a good doc for you can you return?
The best luck I have had was at rheumatology practices at teaching hospitals. They are used to dealing with the more hard to diagnose cases. It seems also, they take more complete histories. I would take copies of you blood tests, particularly the ones that showed that you had a positive RNP. You should get the report on your response to prednisone. I also check out doctors on google to make sure their patients are happy with them. Most teaching hospitals will mentioned the specialties of the rheumatologist, so I'd look for someone with a specialty in ANA negative lupus or MCTD or UCTD.
In the meantime, DON'T take this BS to heart. If you want, you could see a therapist. Mine kept telling me, no you are sick, this isn't your imagination.
Here's a thread that explores the concept of ANA-negative lupus...
http://www.dailystrength.org/c/Lupus/advice/17132115-ana-negative-lupus
I feel for you. As far as labs, they can go from positive to negative. I have always had a positive ANA and antiDNA. However the number do vary, from very high to barely positive. Also when you are taking Prednisone the test results can be affected.
What is next for you??