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Hi, I'm a 28 yo and I'm from the Netherlands. I’m here to share my story in the hope of finding someone who could help me in identifying my mysterious illness.
Until about two years ago, I was a healthy person with no physical complaints at all. I was enjoying my life and doing what people normally do: working, spending time with my GF, family and friends, and exercising my hobbies.
However, early 2017 my life completely turned up side down. After a dinner with friends at a local restaurant, I suddenly started to develop sharp/stabbing pains in my epigastric area (right upper quadrant pain under ribs). In the two weeks that followed, the pain intensified and got accompanied with feeling nauseas, diarrhoea, dizziness, pain in my shoulder blades and feeling full after a few bites. I remember that every time I ate something in those two weeks, even just a little bite of something, the pain would increase severely.
At the end of those two weeks, I passed out (not sure wha happened or how) and my family called the ambulance in panic. Shortly after, I woke up in the ambulance while driving to the hospital and I thought that I was dying, since I was very cold, my hands looked pale and I felt tingling sensations on my lips and fingertips. Luckily that wasn’t the case, and soon I was brought to the ER and hospitalised a few hours later.
That same week doctors started all kinds of examinations, including regular bloodwork, ultrasound, gastroscopy, etc. They could’t find anything until a CT scan revealed severe narrowing of the third part of the duodenum. Wilkie syndrome aka SMA syndrome. I was told that the only effective treatment would be a surgical intervention and since I wanted to understand the effectiveness of the surgery, I Googled the syndrome and found that the condition is mostly diagnosed in people with very low BMI, people with EDS, mainly woman and that one of the major symptoms is vomiting. Since vomiting was not one of my symptoms and I had overweight before the symptoms started instead of underweight, plus I don’t have EDS, I was skeptical of the diagnosis and asked for an second opinion. Although somewhat reluctant, the doctors finally agreed and accepted my wish for a more thorough look at a specialised medical centre. My medical file was sent upfront and I would receive word from the hospital in two weeks after a review of my admission request.
Meanwhile, I got a jejunal feeding tube since I had lost 8KG and couldn’t eat anything without any severe pain. Also, I received antibiotics treatment (pantoprazol/claritromycine/amoxicilline) for an overgrowth of Helicobacter pylori bacteria found in my stomach. The pain decreased somewhat and I thought that the worst part was over. However, two weeks passed and I got news from the hospital: the best doctor in the Netherlands in the field of vascular compressions told me that I didn’t had Wilkie syndrome based on reviewing the CT scan images and declined my admission to the hospital. Around the same time, my symptoms flared up again and now I also started to develop burning pain in my throat and in my chest on both sides, which at that time I believed was the result of the feeding tube running through my oesophagus, causing an some sort of irritation reaction.
Due to intensifying pain, I ended up in the hospital again a few weeks later and got more examinations done (e.g., MRI small intestine, blood work, ultrasonic endoscopy, etc). The doctors again could’t find the cause and ultimately diagnosed me with irritable bowel syndrome. I was given medications including a lot of pain opioids, my feeding tube was pulled out and I received nutritional supplemental drinks to continue with.
During that hospital stay, my situation went from bad to worse. Now, I also started to develop (to me then) absurd sensations in my abdomen: cold and warm sensations, tingling/pins and needles and horrific pain, which felt like my intestines were being squeezed and tearing. Since the doctors already made their diagnosis of IBS, I received no further examination or treatment and got dismissed from the hospital still in pain.
Back at home, now having both old and new complaints, the pain continued and I remember that at one night the pain got so severe that it radiated to my left foot. After the pain attack, I could’t move my left foot anymore and again went to ER. At the hospital some neurological checks were done and also a blood test on Lyme disease. All the results came back negative, except for some loss of feeling in my left foot. Since it was not considered severe enough, I was dismissed from the hospital and sent home.
Going forward a month, I started to develop even more odd symptoms like burning pain other vague sensations all over, sore throat/barbed wire feeling in throat, red eyes, hair loss/brittle hair, fungus infection toe nails, yellow crusted and peeling lips, stiff limbs, rigid muscles, cracked and white tongue, dry and flaky skin, brittle nails, cracking joints with every move and insomnia. The following months I noticed loss of subcutaneous fat all over, thinning skin, tinnitus, muscle loss and stretchy/elastic skin in neck and face, old looking hands and slow healing wounds. And as months passed by, the list of symptoms would grow considerably. Some symptoms eventually decreased or even disappeared entirely, other would come and go, but most would stay and I realised that my life would never be the same as before…
Fast forward to the current situation. I’m devastated, my body feels like it’s finished. The main symptoms I’ve steadily experienced over the past two years include:
- Progressive muscle loss and muscle weakness all over
- Abdominal pain
- Continuing loss of subcutaneous fat, mainly from torso and above, but gained fat in my abdominal area
- Chronic sore throat (and white patches on tonsils)
- Pain sensations all over (pins and needles, tingling, warm/cold, etc.)
Other symptoms/complaints I still have:
- Slurred speech at end of day, dry and flaky skin, brittle nails and hair, peeling lips after water exposure, when eating or drinking warm/lukewarm I develop large blood blisters in my mouth, the cartilage in my ears and and nose is getting weaker/softer, stretchy skin face/neck, varicose veins in left feet, slow wound healing, dry mouth, fungus toenails, tinnitus, cracked tongue and exercise intolerance. Although I try to be as precise as possible I might have missed a symptom or two.
When the new set of symptoms first started to appear nearly 2 years ago, I first thought that it was the result of the poor state of my body after nearly two months of intensive examinations, hospital stays and poor nutrition. But once I started having normal food intake again, regular exercise, relaxing, etc. I expected that my body should go back to normal after a while. Since that didn’t happen and the list of symptoms was growing every month, I decided to put matters into my own hand and approached specialised doctors and hospitals all over Europe, from Germany to Belgium and even in Tbilisi, Georgia. Also, I continued visiting hospitals in the Netherlands in the hope of finding a cure for my now mysterious illness.
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.
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