Hi, I was just wondering if anyone has experienced anything similar with getting a diagnosis/ symptoms?
I have various symptoms of lupus; Malar rash on face, Raynauds Disease, various skin rashes, feeling achey and constantly tired.. however I don't have the blood positive ANA. I had my first rheumatology appointment roughly 6 months ago and came out feeling fairly positive and that things were finally starting to head somewhere. He told me that he felt I had a 'strong tendacy' to lupus and had a lowered immune system, however where I had negative blood work he said that this would eventually test positive over time. Anyway he prescribed me with Hydroxychloriquine and diagnosed me with Fibromyalgia. He told me to come back in 6 months time and in the meantime to keep a diary and log any photos/ symptoms. Within 4 months I was admitted to hospital with severe bilateral pnemonia and a CRP blood result of 200, which resulted in sepsis and respiratory failure. I had Intensive care nurses monitoring me due to the severity of it. They said that my body had reacted to pnemonia like someone in there 80's rather than a 21 year old who should be fighting it. They also picked up on granulomas I have on both my lungs. The hospital nurses mentioned things like possible sarcoidosis and vascilitis - however these have not been officially diagnosed. During my recovery I had my appointment with rhematologist again which I found a complete waste of time!! He didnt seem to have any interest, forgot that he had even prescribed me with Hydroxychloriquine and described my admition to hospital as a mild chest infection!! He doesn't seem to listen at all and honestly was in there 10 minutues as he ushered me out the door and gave me leaflet with a helpline number if any problems and to return in a years time!! So now i'm back to feeling useless with no answers. Whilst I was in hospital I had a heart rate of 126 bpm but regular which they were concerned while it was this high but said it may be down to the infection. 3 months on and my heart rate is irregular and jumping around at 110 bpm and I am experiencing a lot of palpitations and occasional sharp pains. I had my follow up appointment from being in hospital on Friday and he is concerned with my heart rate after doing an ECG and I have now been referred to a cardiologist! I am also going back in December to have a chest X-Ray to see if the granulmoas have cleared, but the pnemonia from when I last had one had improved. Just feels like this year has been spent at the hospital! I just wanted to share to see if anyone has experienced anything similar Thank you xxx