To anyone who is struggling with finding a diagnosis for their symptoms, as I have for two years, and whose symptoms may not have been relieved by B12 injections - here is at least one possible diagnosis that is extremely similar in symptoms but very different in cause and treatment.
I went for a scan this week and was told that I have a gall bladder full of gallstones and with a thickened wall. For my age, it was quite significant - enough for the sonographer to suggest that it would need to be removed (I am 46).
I have suffered from chronic, acute anaemia for the best part of two years and I have ALL the serious symptoms that follow if it is not treated properly - heart palpitations, heart pain, breathlessness, pins and needles in arms, hands, legs and feet and now peripheral neuropathy which is very painful in my feet and I have difficulty walking for a few seconds when I get up after sitting down and a degree of continuous pain in my feet. I am not myself at all and am often in a 'fug' as they call it - unable to think clearly and my memory has become worse over time. My spontaneous speech is muddled and I will often say words 'out of order' or use the wrong word (but one which is similar) although when I am concentrating on what I am saying (ie non-spontaeneous) my speech is normal.
To anyone in the street I look fairly normal apart from a pale yellowish pallor and I sound very normal as I am upbeat and chatty but nothing could be further from the true situation.
I have recently posted about being on a gluten free diet for 46 years and during the last two - I have started eating a huge amount of rice compared to most people as I've stopped eating products made with gluten free wheat starch and started eating Genius bread (made with rice flour). Rice has a huge affinity for arsenic and sucks it up out of the paddy fields like a magnet attracting its opposite pole.
Arsenic poisoning causes Hemolytic Anaemia and I have every single symptom that I have so far been tested for. The gall stones were a real giveaway as I have very low cholesterol and no other associations to the causes of gallstones - except - the amount of billirubin i am producing to destroy my red blood cells...
I am off to the haemotologist the week after next and I will make sure I am tested for everything associated with hemolytic anaemia and arsenic poisoning and will report back with the results.
I would also say to anyone who has had problems with their GP....
....I have fluid on my ankles which I have had for at least six months. I visited my GP with terrible heart pains and palpitations as well as all the other symptoms I've listed (but I went primarily because of my heart) and my GP looked me in the face and told me there 'couldn't possibly be anything wrong with my heart as I would have swollen ankles'. It was winter and I was wearing huge knee high clonky winter boots. That was the last time I saw her. As I left the surgery, there was a very elderly lady sitting outside on a bench, so I stopped to ask her if she was ok. She told me she didn't like sitting in the waiting room and preferred the fresh air. I asked her if she had a good doctor (as I was about to change mine) and she said she did and gave me his name. I asked her if she had met my doctor and she said 'Yes - I saw her once - I was having terrible bladder problems and she told me to stop drinking after six o clock'. The doctor in question is married to the senior partner at that surgery and when I tried to change to a different GP (very innocuously - I didn't even give a reason as to why) - they closed ranks and wrote me a three page letter telling 'me and my family' to 'find another practice'. It took me a month to be able to read the letter in full - but I recorded my meeting with that GP on my phone and when I am better I have every intention of doing something about it. She is a health hazard to any patient.
It goes without saying that you have every bit of empathy from me with getting through what is a very difficult experience and I really do hope that you get to the bottom of your symptoms.
(And after a visit to a CAB last week - it was confirmed to me by a regular tribunal representative that you can use a recording made without permission in court if it is deemed to support your evidence. Of course, sometimes it is difficult to remember whether we asked permission...perhaps we did...)