I say the start of a journey, but it has in fact been a journey I have been on for a long time, but now I am closer to a diagnosis.
I recently had a blood test and it was positive for rheumatoid factor and for anti-ccp antibodies. I am still getting my head around what they are and what they mean. I have had symptoms that fit with a diagnosis of RA and my (new) GP referred me to rheumatology before the results came back, because of ongoing symptoms and other health issues which might, or might not be linked with this.
Following the positive results, she has said that she cannot give me a definitive diagnosis, as she is not a specialist but was confident that rheumatology can help me feel better than I am.
I also have problems with my lumbar spine. Ongoing for many years now. started after an injury to my spine and I am 6 years, 2 operations, many injections late, with further prolapsed discs, arthritis in my facet joints and more. But notably, I have significant inflammation in my vertabrae in the area of damage, seen as modic changes on the MRIs, and getting worse. It has not been given a 'name' except at the beginning of my spine pain journey, as Degenerative Disc Disease.
Interestingly, I was hoping that rheumatology would be able to investigate Ankylosing Spondylitis because I have many symptom that fit this, so while I was surprised at the RA possible diagnosis I was not really surprised at something inflammatory being wrong. My old GP would always put my symptoms down to medication, or referred back pain. He took each complaint in isolation, even with a list of ailments where I felt like a hypochondriac he didn't seem too concerned and never really referred back to my notes despite knowing me for many years. I stopped going about individual aches and pains in the end so many things are not on my notes anyway now, but there are so many that fit with a diagnosis of RA.
I guess now, I am hoping for some hand holding, as I don't know if the symptoms, and blood tests mean an inevitable RA diagnosis or if it could be something else, or nothing? (i have wondered over the years of back pain and nerve pain due to my spine and increased other symptoms if I am actually just over sensitive to pain, spend too much time thinking about my health and creating things wrong that are not wrong and that it's all in my head!)
And what happens next? I know I won't come out of the first rheumy appointment with a magic cure, but if RA is diagnosed, will I come out of the first appointment with some plan? some hope for ending this rottenness that has, along with my back pain, taken my life?
And does anyone want to share their own journey here? At any stage, we can hold hands together and help each other learn to move forward though each stage of treatment.
I have many more thoughts and worries and questions, but this is already horrifically long!
I say that with the thought in the back of my mind that, even while sitting in bed hurting all over and sweating as I am so hot, that maybe it's something else. !