Hi @andiksu

Hope you are well. I read your post and can sympathise with your situation. The first thing I would say to you is 'DON'T GIVE UP,' keep the dialogue going. If I was to tell you the number of times I came against roadblocks just to get to my diagnosis this post would be pages long. Short version is it took nearly 8 years to get a diagnosis. On that journey I was accused of being Mentally ill, over reacting, over sensitive to minor pain, even having Munchausen. Before being diagnosed the pain specialist was pushing for me to get a spinal cord stimulator. If I agreed that would have been the end of any investigation into the severe pain I was experiencing. I knew there was something causing the pain even though the doctors said I had every test to show there was nothing wrong.

I didn't give up and declined the stimulator. I had just started to make the connection to intensity of pain and foods eaten. I was under the care of a gastroenterologist and seeing other specialists too. I mention the food connection to all, it was an immunologist who suggested an angiogram to look for compression. He said it was too rare and highly probable it wasn't it. It took four months of fighting with the gastro doc just to get the angiogram who kept telling me it was a waste of time and money. In the end he yielded, probably to shut me up, only to find I had MALs. He had no idea how to treat it so I searched for surgeons who do. There were only 4 surgeons in the whole of the UK that had any experience, the closest being in a city 2 hours away. He was brilliant, I had a few consultations in 2019 and was booked in for the surgery first week of April 2020.

I was relieved, not only did I have a diagnosis, but I had surgery booked, which could relieve the relentless pain I was feeling. I had everything planned, how I was to get there, staying with family in the city after the surgery and how I would get back. 5 days before the surgery I got a phone call saying the surgery had been cancelled. Covid-19 had hit and taken over.

Since April I've been battling on. If there were stages to MALs I'm guessing I am in the final stages. The fight between nutrition and pain management is always a problem especially if there has not been any surgery. There were certain foods I could eat that didn't send the pain into overdrive; however, week to week the list grew smaller. Now there is nothing left on that list.

My battle now is reducing the weight loss to its minimum, but it is extremely hard as I have lost 6kg in 3 months. I won't give up, must keep going until I am able to have the surgery.

Don't stop asking for help, the medical industry is focused on one thing at the moment but it will not always be. Things do and will get better even if it is not at the pace you are expecting. There are many stories in this post, many similar to yours and some more positive. I would consider @kariulrich a positive story. It was inspirational to me as I had seen how @kariulrich had regained some of her life after surgery and was doing some of the things I would love to do like horse riding.

Keep us informed

Mark