Over the past two years I’ve done numerous examinations and visited different medical specialists, and also have received more than 10 different diagnoses. Below is an overview:
⁃ Wilkie syndrome
⁃ Nutracker syndrome
⁃ Dysfunctional duodenum/disturbed persistalis
⁃ Compression of the celiac plexus
⁃ Pancreatic insufficiency (too much fat in stool)
⁃ Human borna virus
⁃ Cosackie B Virus (pain on chest)
⁃ Lactose intolerance
However, each single time that I’ve received a diagnosis, it’s either disconfirmed by another doctor (e.g., Wilkie and the other compressions, Pancreatic insufficiency), it doesn’t make sense (e.g., lactose intolerance, I have stopped eating lactose but symptoms still continue), is left untreated (e.g., SIBO), or the treatment doesn’t work (e.g., Pancreatic insufficiency).
Some doctors told me that it’s all in my head or that I’m a hypochondriac, while others tried to convince me that whatever it was, to give my body the time to heal naturally and even others said that they honestly don’t know.
I’ve ended up in a situation that I’ve exhausted all my resources and don’t know what else to do or who to approach. I’ve changed my lifestyle and diet, I’ve tried exercising regularly and went to the gym, I went to saunas and tried other mind relaxation methods and meditation, used supplements and natural herbs, and I’ve even tried to not see doctors anymore and live with the symptoms as much as possible and/or ignore my symptoms. However, nothing seems to work, and I’ve come to a point now that I look like a walking skeleton, my bones stick out, I feel very weak, and the last weeks I’ve developed the same abdominal complaints again when I first become ill two years ago. Mentally I try to be as strong as I can with the support of my faith, my finance and family, but physically I feel I no longer can continue in this way.
When it comes down to examinations, I admin that doctors have done a lot already, but there are still some opportunities left. I also have some ideas about the direction to head, but trying to convince my current GP is extremely hard due to the medical history I’ve built up of the last two years. “You have done a lot of research” or “even if you find something, maybe you can’t cure it” is his usual reply. Directions I’m thinking about include:
⁃ Persistent Cosackie B Virus
⁃ Gastreoparesis and/or dyskenisa of gallbladder
⁃ Acquired/secondary mitochondrial dysfunction
⁃ Whipple disease
⁃ Collagen disorder
Whoever you are, whoever reads this message: If you have any information that could help me in getting into the right direction or if my symptoms sound familiar to a disease or condition you might know, please let me know. Any help or input is more than welcome and appreciated.
I’m engaged with a most loving, caring and beautiful lady and I wish to marry her some day and start a family. Even during this awful life changing event, she has never hesitated to leave me and always has been there for me to take care of me. I keep fighting and looking for answers, despite that I’m exhausted, just to keep our dream alive. Please, again, if you have any info that could help me, if would appreciate that from the bottom of my heart.