Hi I have been ill for just over 4 years. I did have one positive ANA test for Lupus the second one was negative. I have had positive tests for bilateral optical neuritis, lesion on my spine, and although I had O bands in my LP I also had inflammation in my blood so MS was discounted.
My father had Lupus.
I am getting worse and finally seeing the Rheumatlogist at the end of the month it has taken me 4 years to get to see one as they have said that it is neurological from my notes and being in the NHS (UK) did not want to waste their time on me basically..
At the moment I feel quite poorly and my right hand is puffy (with little pockets of fluids....I have had the same in my feet for several years) and feels weird and my shoulder aches, and my legs are far worse and I cannot eat as much and loosing weight. I have constant peripheral nueropathy, sometimes feel like I have flu and get a mild temperature...
My neurologist tells me I have an inflammatory disease but he cant give me a diagnosis 100% of MS.
In 1982 I lived in Kenya for a year and was drinking untreated milk. When I came back to the UK I was suffering with fatigue, pins and needles in my hands and myalgia. The doctor at the time thought I had brucellosis. I had test it was negative but I had to see an expert who had another consultant with him and they both thought I had brucellosis but nothing was given for it.
Anyway over the years I have had odd periods of illness all very similar.
I was told in November that I had positive blood tests for:
Anti Smooth Muscle Autoantibody
reticulin R1 Autoantibody
But nothing since.
I am loosing weight lost about 14pounds in 4 weeks as I am just not hungry anymore and feel so ill and tired and in pain.
I just wonder is there anything I should ask the ruematologist I dont want to waste my 15 minute appointment.
I just want to get well again. Thanks for anyone reading this.