This is my first time posting and wondering if anyone has experienced something similar to what I am currently going through. I'll explain as much as possible from the start to end so you guys can get an idea of where I'm coming from, but I'll try to make it as short as possible.
I had my son in May 2015 and then I have been suffering with joint pain since July 2015. I put it down to a old hip pain I have had since I was 13, which the doctors could never diagnose. By the January of 2016 things started to escalate and I have an uncomfortable pain in my feet that would make me stretch my feet out to try and relieve me of the pain. My knee then started playing up, but again I put that down to an old problem as I have had a knee problem since I was about 12. The joint pain carried on escalating and moving to different parts. My elbows, fingers, knees, hips, wrists and feet were all effected. Before I was pregnant with my I was experiencing a pain in my middle finger and just ignored it as I knew my GP would not bother investigate, they tend to ignore a lot of things. I happened to see a GP I do not normally see and he arranged an MRI on my hip and they found I have Sacroilitis, they then referred me to physio, who then referred me to Orthopedics, who then said I was in the wrong place and needed to be seen by a Rhuematologist and it sounds like I have a systemic condition.
My first visit with my Rhuematologist was in Sept 2016 and she sent me for the world of blood tests. My ANA came back 1:320, my Anti SSA (Ro) was positive and I think another part of the ENA test came back positive. Even though I have these positive results along with a lot of symptoms; hair falling out every now and then, eyes sensitive to light, skin rashes, chest pain, stiff joints, ear sensitivity, forgetting things, irritability, pins and needles down my left side, my left turning to ice for an hour then burning up and hurting, extreme fatigue, going to sleep then waking up with a numb sensation on the left side of my tongue and a few more I can't remember, they have put it down to Fibromyalgia. I have also been diagnosed with Chronic Fatigue Syndrome, as of Monday.
I complained to my Rhuematologist that I have been having really painful glands under my jaw since the beginning of the year. I have had it on and off over the years and the GP always ignored it, but since February it became really bad. I went to my GP and told her they hurt and when they hurt I can't talk or can't go above a certain level. She took a swab and told me that "When you glands hurt it is a good thing and it means they are doing their job" I was shocked and disgusted by that as I knew that was rubbish. I told my Rhuematologist and she arranged an Ultrasound. It came back that my Submandibular gland is swollen and the blood vessel inflamed and narrow. They arranged an emergency appt at Macmillian and they gave me the all clear in regards to the C word. I had to have another ultrasound which gave them the same results but my blood results for ANCA were negative. They also done a biopsy and that has come back negative. I am confused because the inflammation is there, the pain is there, the narrowing of the blood vessels is there, I have really bad sinus pain that feels like it is going to explode, my urine burns but my GP is ignoring it as the culture grew nothing, the white cells in my urine were high and the red cells were just above the highest level but they have been sitting at the top end for some years with the GP not being concerned. I lost a stone in 2 weeks and since then my weight is up and down, I feel to vomit, my stomach hurts and feels bloated, I also have this on and off wheezing, it feel like I need to cough then when I do nothing happens but sometimes the cough builds up and it releases but I wheeze before then after I cough it goes away. I keep telling my GP about my chest and they keep ignoring it because the xray was clear.
Has anyone experienced symptoms of vasculitis but the blood and biopsy results came back negative even though the ultrasound is showing it? What did your consultants do after to try and get a confirmation? I am due to see my consultant at the Dental clinic on the 14th. Even though the ladies have been absolutely lovely, I feel like I am eventually going to be left just to put up with the pain in my salivary glands as they cannot get a confirmation. Now when I swallow it has a sharp pain to it.
Sorry if this ended up being quite long, but thank you in advance x