I am so frustrated. I have been having a rash appear in the early morning hours waking me up for the last 2 years. Starting on the face and abdomen and then working its way until last Sept I was covered in it so I finally went to the doctor because of it being unbearable. She done blood work and the ANA panel come back Positive with a speckled pattern titre was 1:640. Joints aching and swollen and low grade fever , protein in urine and blood in the urine. The doctor sent me to a Rheumotoid doctor. He told me that we were looking at lupus and thought it was the good kind. He done blood work which came back neg. and sent me to a dermatologist. They done a Skin biopsy and it came back neg but he also done a CMV bloodwork and it was positive for Epstein-Barr Virus. So now I am confused. He said that all the symptoms are from the Epstein-Barr Virus and that I don't have lupus. Now where do I turn? 2 doctors say "yes" and dermatologist says"No"
Rheumy says yes Dermy says no
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My advice is to keep having blood work done.
I was dx with only two positive blood labs (ana & anticardiolipin) along with other symptoms. But later (after 1 1/2 years )these labs went back to negative even thought I was still very symptomatic, then 3 years after being dx, ana is positive again and now SSa is positive. Labs go up and down but don't necessarily correspond to how we feel. My doc runs labs every 2-3 months just to take snapshots and try to keep tabs on what might be changing. Many of the other common lupus labs I've never been positive for.
You mentioned Epstein-Barr which can cause similar symptoms, I had Epstein-Barr (strange version of it) one year prior to being dx with SLE.
Jen
I was dx with only two positive blood labs (ana & anticardiolipin) along with other symptoms. But later (after 1 1/2 years )these labs went back to negative even thought I was still very symptomatic, then 3 years after being dx, ana is positive again and now SSa is positive. Labs go up and down but don't necessarily correspond to how we feel. My doc runs labs every 2-3 months just to take snapshots and try to keep tabs on what might be changing. Many of the other common lupus labs I've never been positive for.
You mentioned Epstein-Barr which can cause similar symptoms, I had Epstein-Barr (strange version of it) one year prior to being dx with SLE.
Jen
Welcome to the forum !
My advice is to go with the rheumy because I wouldn't say the symptoms you have are typical of EBV even from my limited medical knowledge. Also a biopsy doesn't always show up lupus and EBV antibodies persist years after infection. Assuming the rheumy isn't put off a lupus diagnosis by the biopsy result which would surprise me.
I also think that a rheumy is likely to know more about SLE than a dermy is about EBV
ANA 1:640 is high enough to suggest lupus or similar and no other antibodies are necessary for diagnosis. However I hope further antibody testing has been done.
It's not clear what you mean about the rash though - presumably it is there all the time and doesn't come on in the morning then disappear in the day. Occasional protein and blood in urine in small quantities is fairly common but high levels and persistent levels could indicate kidney damage and a 24 hour test would be necessary.
Make another appointment with the rheumatologist if you don't have one already. I must say I think the " good kind of lupus" is a strange concept. I suppose he means that there is no sign of organ damage which is good as far as it goes. But any kind of lupus needs to be treated so your life will be minimally affected.
Let us know how you get on and do get back to that rheumy - your GP should be kept informed.
Bye for now
Clare
My advice is to go with the rheumy because I wouldn't say the symptoms you have are typical of EBV even from my limited medical knowledge. Also a biopsy doesn't always show up lupus and EBV antibodies persist years after infection. Assuming the rheumy isn't put off a lupus diagnosis by the biopsy result which would surprise me.
I also think that a rheumy is likely to know more about SLE than a dermy is about EBV
ANA 1:640 is high enough to suggest lupus or similar and no other antibodies are necessary for diagnosis. However I hope further antibody testing has been done.
It's not clear what you mean about the rash though - presumably it is there all the time and doesn't come on in the morning then disappear in the day. Occasional protein and blood in urine in small quantities is fairly common but high levels and persistent levels could indicate kidney damage and a 24 hour test would be necessary.
Make another appointment with the rheumatologist if you don't have one already. I must say I think the " good kind of lupus" is a strange concept. I suppose he means that there is no sign of organ damage which is good as far as it goes. But any kind of lupus needs to be treated so your life will be minimally affected.
Let us know how you get on and do get back to that rheumy - your GP should be kept informed.
Bye for now
Clare
Thanks so much for the info. Just to clarify. The Rheumy has done other blood work test but I am not sure what they are and I have the molar rash on face but am woke up by a rash all over body and have to have shots and prednisone to get some confort to rest. This last time I had it in my mouth ears hair and really from head to toe. I know they aren't usually all over the body and am not sure it is linked to lupus or epstein-barr virus either. I called Rheumy today and awaiting a call back since the new findings of the EBV and the neg biopsy but have an appointment with my nurse practioner because I am having some muscle or tendon problems since last break-out and am unable to pick up a glass of water because of the pain. She said before that she thought that the lupus was causing tendonitis so I guess we will see. It is so nice to talk to others with similiar issues. Thanks again:bow:
Had more blood work done and Double Strand DNA 48 was done and came back positive with another Positvie ANA Speckled Pattern 1:640 . Went to Rheumy today and he said that he wants to wait for a final diagnoses because of some other issues I am having. I had my left ovary removed in 2003 and CT scan said that right ovary appears larger than left ovary. What left ovary? so there is something else going on there. Going to OBGYN and then after they do whatever they are going to do then they will decide a diagnoses. I have the symptoms and testings of lupus but wants to make sure it isn't this other causing it so we will find out soon I suppose. LOL Thanks again to everyone and I will keep you posted.
Hi Kate,
It sounds like they may have left a tiny portion of your left ovary behind when they removed it
there are cases where the cells will multiply and form more ovarian tissue. That in itself shouldn't be a problem I wouldn't have thought. What was the reason for removing the ovary in the first place?
At least the Rheumy is being thorough before he commits and that sounds sensible. Do you know what the normal range for the DNA antibodies are in the lab you were tested?
How are you feeling? If you are quite unwell/in pain I hope that he is at least doing something to relieve your symptoms whilst he is waiting to confirm this.
love
Lily
It sounds like they may have left a tiny portion of your left ovary behind when they removed it
there are cases where the cells will multiply and form more ovarian tissue. That in itself shouldn't be a problem I wouldn't have thought. What was the reason for removing the ovary in the first place?At least the Rheumy is being thorough before he commits and that sounds sensible. Do you know what the normal range for the DNA antibodies are in the lab you were tested?
How are you feeling? If you are quite unwell/in pain I hope that he is at least doing something to relieve your symptoms whilst he is waiting to confirm this.
love
Lily
After an ultrasound was done they didn't find a left ovary and no signs of cancer anywhere. Mistake within the radiologist they said. His statement was : The right ovary is larger than the left. What he fell to say was that is was absent like the uterus, etc. So all is well there.
The Rheumy did call after and started treatment for lupus after finding that I wasn't going to have to have any surgery and no cancer. Started me on Plaquenil and also on Mobic which has helped me already. I feel better now than what I have felt in a year and a half. And my abdominal pain has also been relieved. It's a miracle.
Thanks so much for all you guys help. You have been a God sent as I am sure you are with all the ?? Lupus patients. Have a Merry Christmas and A HAppy New Year!
The Rheumy did call after and started treatment for lupus after finding that I wasn't going to have to have any surgery and no cancer. Started me on Plaquenil and also on Mobic which has helped me already. I feel better now than what I have felt in a year and a half. And my abdominal pain has also been relieved. It's a miracle.
Thanks so much for all you guys help. You have been a God sent as I am sure you are with all the ?? Lupus patients. Have a Merry Christmas and A HAppy New Year!
Hi there,
I missed your post last time but that's great news that you are being taken seriously and treated.
Plaquenil takes a long time to reach full effect (it acts pretty quickly on skin issues though) but it is a great basleine drug, really THE lupus drug and it is very safe.
I hope things continue to go well for you,
Katharine
I missed your post last time but that's great news that you are being taken seriously and treated.
Plaquenil takes a long time to reach full effect (it acts pretty quickly on skin issues though) but it is a great basleine drug, really THE lupus drug and it is very safe.
I hope things continue to go well for you,
Katharine
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