Firstly, I realise I need to wait for a discussion with a professional, but I know I'll be waiting months for that and I'm kind of spiralling. A lot of you seemed very informed so I feel your opinion will help me process and understand.
I have had random symptoms for years but nothing showing up in tests.
Started 10 years ago with pain in joints and ligaments after pregnancy, trigeminal neuralgia that lasted two weeks while pregnant (have had random bouts since but nothing as horrendous)...MRI scan showed myelin sheath in the face is thinner. After invasive tests checking MS and lupus, they concluded hypermobility.
Then in the last year I started having things show up in test results, but then they go back to normal.
- Calprotectin (98)..now normal
- ankle pain
- Two swollen knees at different times for no reason and then go back to normal. Shows that there was oedema, but for no reason
- Urine white cells but no bacteria (constant urgency to wee for two months)..now normal
- Liver inflammation that went back to normal (Serum alt 58 now 15) - I had my gallbladder out last year, which i thought caused the calprotectin issue and this.
My doctor would be like...meh, sometimes that happens. Yet I'm sat there wondering why I'm so exhausted and have brain fog but by the time I get to see a doctor, all is fine. Why am I walking like I'm 90? Why do I get random pain that goes as quickly as it went? I find certain lights very difficult to look at. Im I turning into a hyperchondriac? Is this just perimenopause? Is this due to the absolute stress I've been through the last year?
I've not been officially diagnosed by a rheumatologist but my results are as follows from one so my GP has referred me.
white blood cells 13.1 (no symptoms of infection at the time)
neutrophils 9.1
anti nuclear factor-positive
SM/RNP 8AI
Chromatin IgG Ab 3.7 AI
Ferritin 25 ug/L
Weirdly, it gives me relief it could be this, because it explains so much. But I'm worried the doctor will take another test, and everything is just in normal range and I get...yeah, its just an abnormal test. Sometimes that happens (cause that happens....every....single....time). Can the inflammation markers stop? Does that mean I don't have it?
Any advice would be great. Sorry for the essay!!!