Hi Everyone, I'm new to the forum.
I've been having symptoms for the best part of two years, it initially started off as memory loss, fatigue, numbness and tingling in hands/feet and legs and then I began to develop more and more symptoms. Initially I was told it was all due to a Vitamin B12 deficiency but after having an initial loading dose of B12 and top up injections regularly I didn't feel any better.
Along with the symptoms I already had I started to develop horrendous pains in my abdomen and ended up in hospital and at the Dr's office several times before anybody took me seriously. I was referred for an internal scan but nothing was found. It was suspected at the time that I had a cyst on my ovaries that had ruptured but I wasn't convinced.
Fast forward a few months of recurring UTI's, constant cold's/flu symptoms, general feeling of being unwell , chest pain, swelling of fingers/knees and severe joint and muscle pains I finally decided enough was enough, I felt so run down like I just could no longer cope with the pain and tiredness, I went to my GP who by that point was sick of the sight of me and gave her a list of every symptom I was having or had and a list of my full family history. Finally she agreed to do some testing.
It took around 2 months before I heard anything back from my Dr, I had by this point assumed that everything had come back normal but that wasn't the case. I had abnormal results with significantly elevated Anti B2 GP1 and IGg. I was told to wait 3 months and then re-test my bloods. which I did.
Again, the Dr's took ages to get the results and I had to phone them consistently to see if they had been checked by anybody. At this point I made an appointment with the GP who told me that my results had came back positive again and that my Antiphosoholipid antibodies were more than 10X what they should be.
I saw two GPs who both told me that there were 99% sure I had SLE and I was referred to Rhuematology.
I had to wait almost 3 months for the appointment and it finally came around yesterday. My Rhuemy discussed my family and medical history at length and suggested that she thinks that at the moment I have Undifferentiated Connective Tissue Disease with Antiphospholipid Antibodies. She then preformed a physical exam and found that I have Carotid Bruits, she has referred me for Lung,Heart,Neck and Liver Scans, Chest X-Ray, MRI, CT scan and a kidney biopsy but I'm not totally clear on why all of these tests are needed and what she might be looking for?
I'm 19 years old and this is all very overwhelming at the moment, I don't feel like I really understand whats going on and I'm a bit confused about it, I'd really appreciate any advice anyone could give to me.