Thanks to everyone who has taken the time to reply to me. I feel very happy to be here and I am obviously in the right place! The transformation in my mood since I read all of your positive comments has been wonderful and I no longer feel the sense of doom that I had before. So, as I understand it, I could be around for a long while yet (my poor husband! 
) and it’s just a case of watch and wait and managing my symptoms.
I have the most incredible lady consultant at the Churchill Hospital in Oxford looking after me. She has already emailed me twice since my appointment on Tuesday to check on me and discuss a plan of action going forward. I have also been called by a nurse telling me the blood tests I had on Tuesday show an improvement in my haemaglobin levels and that they won’t need to see me now for another three months. All this is positive but I am still stuck in the meantime with some debilitating symptoms.
I have had the “dodgy” blood test results for about 15 months, different levels going up and down which initially my doctor attributed to post concussion syndrome. I fell down a lot of stone steps in France in October 2022 and landed on my head so was out of action for four months, unable to get out of bed, constant vertigo, it was all pretty awful. I gradually got better to about 60% capacity I guess and have been suffering “brain crashes” ever since if I do too much physically or mentally. The thing that seems to eliminate the brain symptoms after a crash over the course of a few days is a lot of sleep so I am kind of living two thirds of my life. But I’m accepting of it and very lucky in that I’ve been able to retire and I don’t have grandchildren or a hectic life, I live a very quiet existence with my husband and the only thing I begrudge is not being able to walk my dog for miles as walking was my passion.
So I was bobbing along for a couple of years dealing with that and then the blood test results I was having for my underactive thyroid and HRT check ups (yes I have that to deal with as well, I’m very attention seeking!) started to cause the doctors concern. This was followed by more new symptoms in January of this year both with my digestion and my joints. Also I developed thick, scaly dandruff all over my scalp and my hair was breaking as well some raised itchy bumps on my arms and legs where the skin was rubbing off the top of them and there was blood underneath, almost like a blister (I still have the dandruff and the itchy bumps despite trying medicated shampoos and creams). So because of these symptoms and the continued problem with my blood, I was referred for a bone marrow biopsy. This showed that genes TET2 and SRSf2 had mutated so I was sent for a PET scan where no inflammation was found, just some swollen lymph nodes in my neck but nothing major. So far so not very good I thought.
Then in January, I started to have serious digestive issues. I felt like my stomach had shrunk and if I put too much in it, the contents after eating were just shooting straight back up like a big burp. This has continued and become worse on and off ever since and I have lost 2.5 stones in weight. I learned that I have something called “water brash” which is excess saliva, so one of these episodes is preceded by a lot of spitting foamy saliva into a bowl after 20 minutes of eating even the smallest amount. This gets over worse over the course of about an hour and then food comes up with the saliva. I have very bad belly ache with it and if I’m really unlucky the entire contents of my stomach comes back up. So since March I have had lots of tests including a barium swallow which showed “uncoordinated motility” in my oesophagus, a gastroscopy which showed nothing sinister just a very reddened stomach lining and gastritis and then a colonoscopy which showed mild diverticulitis. Nothing that might cause this ongoing regurgitation.
At the same time, I started getting joint pain, initially in my wrist and fingers and then my ankles and toes. Then bizarrely both my jawbones ceased up and my knees and hips became really painful. This is crippling on some days and manageable on others, it is very much a case of “flare ups” and then remission from the symptoms and moves around my body so one part of my body will be inflamed when another is not. I’m sleeping half the time now as all of these symptoms are exhausting. I’m only able to keep “dry and beige” food down and I try not to have anything with too much fluid in it as if I do I am bloated and it comes back up.
So yesterday after a long six month wait I finally saw a rheumatologist who was quite dismissive of my symptoms and said oh just a bit of osteo arthritis, we can give you a steroid injection in your wrists and he also said he thought it was nothing to do with any blood or digestive issues. I still have no idea how to sort the digestive problems going forward. BUT I am one of those people who googles everything and I have found one article of interest relating to the possible cause of my joint paint which I’ve popped below for any of you who are still reading this after this ridiculously long ramble! I promise all posts will be shorter in future, I am just giving my history and I’m not very good at using 10 words when 100 will do (ask my husband, I told you he was poor!)
Thanks to all of you once again for making me feel more positive and less alone with my diagnosis.
Cathy x
I have copied in (using 
You have definitely come to the right place! Like 
and you’ve clearly had a lot of investigations but with no real conclusions? It sounds really horrid and must be really spoiling your enjoyment of food? 
I hope you can continue to manage it by your choice of foods.
