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Avatar universal

Undiagnosed and Unwell

I apologize as this post is quite long but I am at my wit's end and willing to take any help I can get. I am looking for any opinions as to what you might think is wrong with me. I am a 29 year old female.

Starting last year around May I started having low grade fevers ranging from normal to 102 degrees or so. They never are consistent and just seem to crop up randomly. In July of last year I underwent a hysterectomy for endometrioses and pelvic congestion syndrome. I was feeling very badly and my gynecologist at the time told me it was possible the fever was related to what was going on. So I had the surgery, the only complication was very low blood pressure which they couldn’t seem to find an explanation for, but the fevers never went away afterwords. I think it was the end of August when I started getting more symptoms. First it was my cervical lymph nodes. They swelled very large and became painful. A few days after the initial swelling I woke up one morning and both my hands and feet were beet red and extremely swollen and painful, so much that my wedding ring had cut into the side of my finger. Then came the rash, under my skin, red, and lacey. Of course I was having the same fevers during this time and felt extremely fatigued and sick. I went to my GP at this point and he was unsure of what might be going on and decided to run some test, blood cultures, and sent me to a dermatologist for a biopsy of the rash. The blood cultures came back negative for infection. The other blood work showed high bad cholesterol, low good cholesterol, low levels of vitamin d, B12, and folic acid, low RBC count but ferritin level of 136, negative ANA. The biopsy showed superficial perivascular dermatitis, which they told me was some kind of inflammation around my blood vessels, but they didn’t know what it was caused from. My GP then told me that he thought I should see a rheumatologist. So I chose one of two in our town and started a battery of tests with him. At one point I had another episode of the swollen lymph nodes and they sent me for a CT Scan to check sizing for a biopsy. The minimum biopsy size is 1cm and although I had multiple enlarged nodes they were all around 9mm so they wouldn’t do the biopsy. I have been tested for rheumatoid arthritis which was negative several times, then came back the last time positive but had a normal titer. He x-rayed my hands and told me I have the beginning of osteoarthritis in them. Then there was the test for Wegners Granulomatosis, in which my anti-pro3 titer came back extremely high. He told me was unsure of what it meant and just told me it was inconclusive (I have since had another doctor tell me that anti-pro3 is very indicative of Wegner’s. I begged him to re run the test to rule it out, which he finally did the last month I was under his care and it came back negative this time.

He also tested me for ANA which was positive then negative then positive and now negative again. I was tested for Lupus and Sojgren’s. The actual Lupus test was negative but the Anti-SSB’s for Sojgren’s cam back at 0.9 which was the maximum cap for the high reference range. When I was tested again for it this April it came back as 1.0 which was flagged as high. Then I had a third test for Sojgren’s this month and it was back down to the maximum cap for the reference range of 0.9. My new rheumatologist did not seem concerned. My recent kidney function test cam back at a 78% which is considered stage 2 kidney disease however currently I am just being monitored for function every six months. I know I have been tested for several other things, which I would have to review my labs to be able to say for sure. But my test results are always mixed or inconclusive. One time everything will be unremarkable and then the next set of tests with have random things showing as positive but never enough for him to know what’s going on. They have taken my ESR several times, sometimes it’s normal and other times its just barely in the range they considered high but apparently not high enough to be deemed significant. They recently tested my RBC count again witch was low and my ferritin has dropped from a 136 7 months ago to a 36 now, again the doctor said I wasn’t anemic and didn’t seemed concerned that it had dropped over 100 points in 7 months. I have what I think is chronic EBV and also chronic CMV. I think it is chronic because every time I have been tested for it my titers are off the charts.
As for symptoms, the list is long. Aside from the malaise and extreme fatigue, I still get those lacey rashes, swollen hands and feet that get red and feel that they are going to spontaneously combust (this also happens to my ears as well), daily headaches, joint pains (sometimes my body hurts so badly I feel like I’m going to die) I vomit almost daily in the morning and often feel nauseous throughout the day. I was recently diagnosed with IBS, and I have extreme reflux from pretty much everything I eat. I have dry mouth, skin, eyes, and it seems like the more water I drink the thirstier I am and the more it dries out my mouth. When I get sick or have surgery I often have trouble recovering. I get chronic UTI's and kidney infections, horrible cold sore out breaks, etc. Also it seem like if I get a UTI or cold or anything that dampens down my immune system, it is followed by a barage of things. For example recently I developed what they told me was an abscess above my front teeth and behind my nose, except there was no reason for the abcess, no damage to the tooth or anything. Nevertheless it was huge and they immediately got me in and surgically lanced and drained it. Three days later I developed a UTI that turned into a kidney infection, then I got a head cold and then I got two cold sores in one week. It seems like my whole body is falling apart. The infection still hasn't cleared up and I've had two continuous courses of antibiotics. I get sharp pains in my abdomen and what I think it nerve pains in my legs and arms (although no one has officially told me what they are). I get ringing and drainage in my ears, and have chronic sinusitis. I have noticed some memory loss also. I have started breaking out like I’m a teenager and they are always very sore and take forever to heal, I get it on my face upper back and sometimes shoulders and neck. I also have Raynaud's phenomenon and livedo reticularis.
My last rheumatologist told me I showed evidence of some sort of autoimmune or connective tissue disease but he said he could not make a definitive diagnosis and there has also been some mention of possible vasculitis but again no one will give me a definitive diagnosis. At one point he told me it could be lymphoma or some form of cancer and suggested I get a malignancy workup. So my regular doctor referred me to an oncologist who didn’t even run any tests, she just took my history and said that she felt pretty certain that it was not cancer and felt very strongly about it being autoimmune.
So I felt like I wasn’t getting anywhere with my last rheumatologist and felt he was cold and uncaring and so my regular doctor sent me to a new rheumatologist out of town. This new doctor told me he was going to disregard all my previous tests and run his own. So he did this and tested all the usuals, ANA, ANCA, Ferritin, and some specific ones for different autoimmune diseases etc. All these tests came back negative this time along with my ANA.  He said he would like to retest in 6 months and then referred me to an infectious disease specialist. So that’s where I am at right now, more waiting, and still feeling terrible. I am more than happy to answer any additional questions you might have. Thank you so much for listening.
3 Responses
Avatar universal
This in conjunction with your other post with the low sodium - I would ask you to see a neuro-endocrinologist if they will let you in without any imaging. Find a university center and send them your testing to endocrinologists there.

Did they do any imaging on your kidneys?
Avatar universal
Sorry to read what you are expieriencing at the moment, did anyone try you on a short course of steroids to see if they had any effect. A good response often helps to give a clearer pictuir of what is going on.
Avatar universal
Hey! why don't you try to have a look to this  medical web ?
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