Misdiagnosis & waiting for results

Hi everyone, I just needed a safe place to explain my situation. Two years ago I was diagnosed after clear CBC and a Brain MRI of M.E. Since then I have detiorated health wise, been diagnosed with IBS, GERD and Asthma. Symptoms fatigue, that led to constant stomach pain, blood in urine (chronic), acid reflux, breathing difficulties after activity, persistent bloated ness, increased need to pee, unexplained weight gain yet no appetite. Finally my GP reviewed my case from the beginning after I started having a heavy period after 6 years of none. I'm booked in for 3 scans in 2 weeks. I'm not panicking I just want answers as I've gone from a very active working mum to someone who hardly has the energy to go out and is in constant pain and uncomfortable. Can anyone share their experiences that have been similar to mine? Many thanks for reading 

  • Hi I'm in a similar situation, currently waiting to be investigated for blood in the urine. I have horrendous groin pain and I'm under a neurologist for constant tingling and twitching in both feet and legs. Also waiting for investigation from a gastro for chronic ibs symptoms. So I've got no answers for you but would love to stay in touch through our journeys! 

  • Hi! Thank you for your reply x 

    It's an incredibly difficult time isn't it? The uncertainty. Please do keep me posted as well on how you are doing. 

  • It is, its horrible. I had a ultrasound June 2020 which picked up a tumour on my kidney so was reffered to urology under the 2ww, had a massive breakdown and didn't leave my bedroom for months, even after I found out it was a benign tumour. Just can't believe I'm going through it all again its the waiting that is the worst! I'm 35, have 2 daughters aged 8 and 11, dont want to depart just yet! I got reffered back to urology last Thursday but because of my age it won't be under the 2ww so will be between 1 and 2 months. 

    What scans are you having done? 

  • Because of age? That's why I kept being dismisssed with other diagnoses. I'm 42 two kids one 19 one 6! Big gap. You've had an horrendous time and I really feel for you. I'm having kidney scan, pelvic ultrasound and transvaginal one to top it off, feel like they are being thorough now!