Hello all
I’m recently discharged from hospital and looking for some insights if anyone can share as I had lots of tests but they’re stumped and everything is on the table from leukaemia to autoimmune conditions like Lupus and Sjogren’s. I’ll try to be concise without having to drip feed. I should mention I’m not in the UK so this isn’t under the NHS.
I (39f), am 20 months pp with DS (would love to try for another soon). C-section delivery as high blood pressure, then developed pre-eclampsia when he was born/very shortly after as they struggled to manage my BP in recovery and had to spend 1.5 days in ICU. Difficulty recovery from section, and have diastasis recti (diagnosed only 3 weeks ago). I should also add in case it’s relevant that I am asthmatic, I have spina bifida occulta, scoliosis, have a dust mite allergy and anaphylaxis. It seems to me that I catch infections easily.
In February of this year, I woke up I thought it was the flu however it came on very quickly and improved by the next day. About two weeks later the same thing happened again – quick onset and improved within a day or so. And this recurred every 3 to 4 weeks until the end of June. Things settled over the summer but flared again a few weeks ago.
I have started to refer to these occurrences as “episodes”, and they normally come on in the middle of the night. I wake up quite disorientated and normally freezing cold, and it takes a lot to warm me up. Suddenly I am too warm and then I'm dripping in sweat, often with a temperature of about 39C. I am often very nauseous during this time and have on occasion thrown up. Even when I don’t throw up I often feel a sensation of being very empty in my stomach. I’m often unsteady on my feet, and it seems I sleep in very short periods with broken sleep and strange dreams. I always have shooting pains in my body, particularly hands and legs and I feel as weak as water. I’m completely unable to work or take care of DS when I’m having one of these “episodes” which causes my husband to miss work.
In June I went to the GP a few hours into after the onset of one of these episodes where they took my blood and I received a call the next day (when I was predictably feeling much better) to say that my white blood cell count was very high and the doctor couldn’t understand how I could be feeling better already. I was sent to a medical assessment unit at this time but this proved inconclusive but I did get a diagnosis of rheumatoid arthritis but it was explained to me that this would not be the root cause of these episodes I had most recently the first episode since the end of June and again went to my GP he referred me to an E as a urine sample showed that I had a UTI that I didn't know about.
After a day in A&E where things like Lupus were mentioned and I was started on IV antibiotics for the UTI, I was admitted to a ward where I met with the rheumatology team and also a more general doctor and his team. Nothing conclusive has come from this, though they’ve said the Hematology team are fairly confident it’s not leukemia, and things are pointing more towards an autoimmune condition, as my white blood cells are back to normal within 2 days. I don’t know if there’s any connection, but I’ve become a lot more aware, in the last few months, of aches and pains in my hands and feet primarily, but also my limbs.
Thank you if you’ve made it this far. I have an outpatient appointment tomorrow with the Rheumatology team so I’m trying to be as prepared as possible for this, and I’m looking for any experiences or theories people might be able to share that I can research/bring to this appointment.