I am a 33 year old male, and I currently have a positive ANA and anti-RNP with all other autoantibodies negative.
This entire episode started last April when suddenly I started having a weird lump like feeling in my throat and GERD after a stressful period in my life. I had random pain around my neck but they went away after a month.
Everything was fine for a while then one day last summer I felt very very tired for a a few hours - I always had very low blood pressure of around 100/60 so I thought it was due to that, but when I lied down I was still very very tired - it is kind of hard to describe other than I could barely see when I was standing up but was not light-headed. This episode happened only once and I didn't think too much of it.
Then last September I went to an ENT doctor to see about my neck pains that recurred, and he said it was chronic sinus infection and gave me 4 weeks of Septra/Bactrim. I have taken bactrim before without allergies. But 2 weeks into the course, my entire gum swelled up and these weird sores/lumps came about in my mouth. At first I thought it was a gum infection but then I figured that was impossible since I was on antibiotics. I went to my dentist and he said it was my wisdom teeth...
I looked at some of my oral lesions with my phone and then they looked like candida infection, so I went to another ENT to ask for a anti-fungal medication, which she gave me without question and after taking it - half of my oral lesions went away.
Then I was left with the rest of the lumps in my mouth which does not have white patch on them, but they swell up and down depending on my stress level.
I went to my naturalpath and he took some blood test of my metabolic panel and everything looked fine and he said it maybe just a medical reaction to the Bactrim which will take a while to go away.
I was not convinced about this drug-reaction theroy so I continued my research online and accidentally found that auto-immune disease has mouth bumps/lesions as a precursor to full-blown manifestations. I was curious and ordered an ANA test myself online along with a urine protein test. I expected the result to be negative but it turned out to be positive for ANA and a 1+ in my urine for protein.
I went to my GP and asked him what I should do next and he ordered a microalbumin-creatinine ratio test along with an autoimmune panel, and a full metabolic panel.
The result was that I had mild microproteinuria, positive anti-RNP, but my renal function is actually quite good - in fact they actually WENT UP from 115 eGFR to 130 eGFR as my serum creatinine dropped from 0.85 to 0.7, and my BUN dropped from 12 to 9....WHAT THE HECK???
My C-reactive protein is 0.08, which he says is super low and indicates I have no signs of systemic inflammation.
He said this might be a false positive for autoimmune since I do not have any other symptoms, but I am not convinced.
I did more research and found that anti-RNP is very indicative of mixed connective tissue disease, and causes GERD and attacks the esophogous, which I occasionally suffer from. But although I have NONE of the other classic symptoms of MCTD/Lupus, I wonder if this disease is already starting to attack my kidneys since it takes a different course n each individual.
My symptoms are:
-oral bumps that grow or shrink depending on stress
-occasional lump like feeling in throat, maybe 1 out of every 3-4 days for a few hours (does NOT cause swallowing difficulties, even when it feels like I have a rock in there, I can swallow big things just fine, seems to be a nerve thing).
-my thumb has a mild pain at the tip, and I only feel it when I press on it, but this pain did not exist a few months ago.
-I have microproteinuria (small amount of protein in urine).
I would not say any of this actually affects my life in any form yet, since the symptoms are not even things I would pay attention to if I were not a super paranoid type of person. I also have no sensitivity to sunlight or any join pain. Maybe I do feel a bit tired sometimes but I can work 8 hours/day doing really intense software programming just fine.
I am scheduled to see a rheumatologist later this week, who I booked the moment I found out my ANA was positive, but I don't think he'll give me a diagnosis of any kind based on my symptoms. So I figured I am going to leave his office without much additional info.
I am just worried about the kidney damage may already be starting, and I am also worried that this means I have "pre-MCTD", just like how there is "pre-diabetes".
I know diet and exercise can reverse pre-diebetes, but I cannot find anything on how to reverse "pre-MCTD"
- a positive blood test without any classical symptoms yet.
I have no clue what to do at this point - if anyone here has any experience dealing with how to delay the progress of this disease, I would really appreciate it. I would prefer not to be on any of the powerful immue-suppressing drugs, so I would hope to delay that day as long as possible.