I have been reading and learning a lot from this forum the last few months, and I thought that maybe some of you would be able to give me their advice while I wait to see yet an other specialist I don't know what to think...
I am 35 years old. I started feeling unwell during my last pregnancy 8 years ago, and after it, having scary Aura preceding light migraines, including vision, thoughts and speech disturbances. I had been getting strong headaches regularly since my pre-teen years though, but no aura. MRI was normal as well as tests for epilepsy, blot clotting disorders and heart check ups. I was diagnosed with very dry eyes after complaining of constant pain in eye movements and sensitivity to light. I started having muscle pains that would move around my body through the day, had extreme fatigue and brain fog, also random chest pains, and traces of blood in urine tests. At some point the ANA test turned borderline positive but it was not investigated.
It seemed that no doctor could find what was wrong and I heard the stress/postnatal depression talks ... Fortunately, with time I got better even though I always struggled with something at some point: fatigue, neck muscles getting 'stuck', chronic yeast infections, moderate hair loss along hair line, strong headaches several times a month, knee pains after sitting for a while, moderate random joint or bone pains, low vit D, low feritine levels... Migraine Aura were not as common but I would sometimes get visual effects, or strong 'deja vu' feeling associated with feeling sick.
Last year I had to spend a lot of time and money at the dentist, lost two teeth and also had a very painful area on my gums that no dentist could help with, a gum specialist ended up saying it was chronic inflammation there and offered to do a gingivectomy which I refused. I could only numb it with essential oils for relief. Almost a year after, the pain is on and off, a lot more manageable, but still there some days.
A few months ago I started having Raynaud's in my hands, and severe, red dry eyes, after experiencing two days of chest pain when I took a deep breath. I also mentioned a few rashes I have had to my GP, who ran blood tests. The only abnormal result was positive ANA 1:320. I was referred to a Rheumatologist. (They also found in the same month 1, then 2 big ovarian cysts which I never have had any before)
The Rheumy was nice at first, gave me blood tests to repeat in 3 months. In that time I developed again the joint pains, muscle pains, moving around my body. Brain fog and fatigue became strong again too, I had muscle twitches, memory issues and my hair line is noticeably higher than before. When I saw her again:
ANA test had come back negative,
The DSDNA by Farr was positive 9 (neg <7)
Complement C3 WAS 0.74 (0.78-1.50)
Complement C4 was 0.16 (0.16-0.52)
Because of the ANA turning negative she said that she did not need to see me again. ESR and CRP were normal, as everything else.
I also saw a kidney specialist for the blood traces in urine, who diagnosed isolated benign microhematuria (no proteins). He also saw a patch of livedo reticulatis on my skin and wrote it down on his report. He said, as well, when looking in my eyes that I had cupped discs (?).
I came back, totally lost, to my GP who tested ANA again and a few other things.
ANA was negative again
DSDNA (I don't think it was by Farr this time) was negative
Thyroid antibodies were >1000 (lab range approx <32)
I had a nuclear thyroid scan, everything is normal, TSH is normal too.
So now I will be referred to an immunologist to see what kind of Autoimmune condition I have, and what could be causing all those symptoms. I think that I have Hashimoto with this very high level of thyroid antibodies but TSH has always been ok all those years, so not sure if this could be causing all my problems.
Does it look like Lupus to you, even though the blood tests have been changing over time? I feel very confused
Thanks for reading