Could I be misdiagnosed with sjogren's syndrome?
Could I be misdiagnosed with sjogren's syndrome? I am 20 years old. Hair loss, joint pain, easy bruising, weight loss, positive ANA, had been anemic(resolved), had thyroid problems(resolved), swollen lymph nodes, very very tired, and I overall feel bad. Two more nodes have swollen on the side of my neck; they don't hurt just feel swollen. I have also had pain in the back of my sides a little below my ribs, but I did not discuss it with the new doctor. My primary physician took tests and after a while she diagnosed me with Lupus. She said I needed a Rheumatologist for treatment. I decided to move shortly after and never went to the referral appointment. So, I found a Primary physcian to refer me to a rheumatologist in my new state. The new doctor does not have my medical records or results from previous tests. He ran some tests and consulted the rheumatologist, then told me I have sjogrens syndrome. He said that I do not fit the classical definition of Sjogren's, but i have it. I have no dryness, which I understand to be a hallmark of the disease. I would like someone's opinion who has experience with this disease. I'm not sure what I have, and yet this new doctor has prescribed prednisone and plaquenil for treatment. Should I get a second opinion? Which doctor seems to be on the right track, my previous dr. or the new one? These diseases seem to be very tricky so, not all doctors are experienced with the diagnosis. Please, I am looking for honest opinions and a little bit of help. I will appreciate your helpful advice and comments. I would to like to know exactly what I have and how to best care for it. Your input will hopefully help me find the right answers. Thank you and have a wonderful day. |
I have a severe case of Primary Sjogren’s Syndrome. From your description, it appears you have Lupus. The tests that were run on you probably was the full Lupus Panel, which includes the test for presence or absence of the ANA antibodies which is tied to SS. Please write me if you wish. I have extremely dry eyes and mouth and also other areas of my body. It is not fun and can be quite debilitating like it was for me today from 10 a.m. until about 9:30 tonight. I would like to help.
Julie Rodriguez
Ask for a lip biopsy. My bloodwork was negative but the lip biopsy was positive.
Yes, the lip biopsy is the “gold standard” for Sjogren’s diagnosis. Don’t forget that Sjogren’s can also affect many of the internal organs. 15 years ago, age age 50, I was diagnosed with Pulmonary Fibrosis associated with Sjogren’s Syndrome (through lung biopsy)and after treatment initially with Prednisone (followed by Plaquenil) last year my lung dr. says the fibrosis is completely resolved. However, I do have to remain on Plaquenil as the fibrosis could return.
Since you are reporting “pain in the back of my sides a little below my ribs” please let the rheumotologist know about this as it could be relevent to your Sjogren’s.
Also, many thyroid conditions are considered to be autoimmune, and it is common that if you have one autoimmune condition, you will additionally have another.