I have not posted in a while as I have been really unwell after shoulder surgery which has taken me 5 months to (not quite) recover from. From my other postings you will see that I have hypothyroidism (mostly probably Hashimoto's), coeliac disease, lichen sclerosis, high blood pressure and currently under a rheumatologist being treated for UCTD....so I am battling each day with many symptoms and had to resign from my teaching job due to being in so much pain.
A year ago the good people on this site recommended I request a second opinion with a well respected rheumatologist in Manchester who I have seen recently. This person was incredibly thorough and gave me a great deal of time by listening to all my symptoms. He ordered his own blood tests and sent me for x-rays too. I have been back since for nerve conduction tests and he has ordered a lip biopsy to rule out sjogren's syndrome. I will go back in a few months for all the results to be discussed etc. Quite honestly, it was phenomenal the care I received...why could they order so many tests when my ordinary rheumy kept sending me back to my GP?
The problem is, he confirmed that I most definitely have osteoarthritis (hands, wrists, knees) and probably wear and tear in my neck. He does not believe in SERONEGATIVE LUPUS despite some obvious similar symptoms. I cannot tell you how frustrated I am as I am still hovering in limbo land. I know there are many people on here who have been told they have seronegative lupus?
Two tests that did come back which I am rightly concerned about as they indicate tissue damage to either the heart/liver/ kidneys etc are:
LDH (slightly elevated) 217 u/l (20-220)
ALT 53 u/l (5-40)
I am to keep up with the Plaquenil; surely this is for people with connective tissue disease not OA?
I have my regular rheumatology appointment tomorrow (with my first rheumatologist) and feel awkward that I requested to see someone else. Quite honestly he has fobbed me off so many times that I feel it is almost a waste of time going but I will have to continue to see him when the second opinion person discharges me later in the year.
I am feeling really wobbly and unsure of all the medical problems I have as it is all so unpredictable and debilitating. Any kind thoughts would be appreciated
Thanks in advance for reading this long winded post