Medical mystery (6+ years)

I am at a loss. This has been an ongoing and progressively worsening problem for approximately six years, and it has affected multiple systems in my body.

How This Began

Six years ago, I developed appendicitis. Unfortunately, the doctors missed it, and my appendix was not removed for approximately three years. During those three years, I repeatedly went to doctors, underwent surgeries and different medical interventions, and continued becoming increasingly sick without anyone identifying the underlying problem.

When the problem was finally discovered, my appendix had rotted. It had developed abnormal, hard tissue that looked almost like scales around it, as well as another disease or condition that I unfortunately cannot remember the name of. I do remember being told that it was something people generally do not develop until they are around 90 years old.

During those three years, I experienced approximately 45 different ailments or symptoms. I saw an ophthalmologist, optometrist, neurologist, otolaryngologist (ENT), allergist, immunologist, podiatrist, pain management specialist, gastroenterologist, chiropractor, osteopath, naturopathic doctor, reflexologist, physical therapist, pelvic floor physical therapist, urogynecologist, obstetrician-gynecologist, and a gastrointestinal surgeon. This is the list that does not include every doctor that I saw in the hospital, and the ones I know I'm forgetting.

These are the ones that come to mind, although I'm sure that I'm missing some: severe migraines, low blood sugar, freezing fingers and toes, random bleeding (not part of the cycle), rashes, mesenteric adenitis, colonization of C-Dif, severe eye pain, visual disturbances, vertigo, positional vertigo, simply sick, repeat tonsillitis, jaw pain, low iron, back pain, lack of appetite, insomnia, arm and leg weakness, muscle deterioration, random skin lesions and boils, difficulty breathing, lower abdominal pain, upper torso pain, chest pain, dizziness, swollen glands, vitamin deficiencies, itchiness, fatigue, nose irritation.
Are you getting the idea?

Oftentimes, I could not stand, sit, or walk for more than several minutes at a time. My life was literally on pause for three years. I was constantly in and out of the hospital.

It is too long to list everything I tried during that period, but one intervention that had a major impact on my life was eliminating a large number of foods.

I stopped eating:

- Soy
- Gluten
- Eggs
- Dairy
- Peanuts
- Potatoes
- Yeast

When I eventually began reintroducing these foods, my body no longer tolerated gluten, eggs, and dairy. They became significant triggers.

My Reactions

My reactions vary considerably in severity, but they generally involve a combination of the following:

- Becoming extremely weak and having difficulty walking
- Feeling as though my body weighs a million pounds
- Difficulty holding my head up
- Becoming so exhausted that speaking is physically difficult
- Profound muscle weakness
- Severe abdominal pain
- Nausea
- Dizziness or vertigo
- Headaches, although not as frequently
- Elevated heart rate, although this is rare
- Throat tightness, although this is rare
- Blood when I use the bathroom
- Orange liquid on the toilet tissue even when there is no stool
- Complete exhaustion

The blood is not mixed into my stool; I generally notice it on the tissue when wiping. The orange liquid is also something I have noticed repeatedly, even when there is no stool present.

I recently had an episode where I I was hit with the wave of complete exhaustion, started going unconscious, didn't thank God but was completely paralysed for hours. I could not talk or move, and did not even have the energy to vomit and instead kept dry heaving.

The Reactions Are Progressing

One of the most concerning aspects is that foods that were previously completely safe for me are now beginning to cause reactions.

Just before I wrote this, I had a severe reaction to salmon, which I have eaten before without any problem. This time, shortly after eating it, I developed a severe wave of abdominal pain, significant throat tightness, a high heart rate, and profound muscle weakness. I had to physically hold my head up until I found somewhere to rest.

The list of things my body seems to tolerate continues to get smaller.

Foods that were previously stable for me, such as avocado and sweet potato, have also begun causing similar reactions.

It is not limited to solid food. Even some liquids that never used to bother my stomach now cause problems. For example, coffee can now cause my stomach to hurt.

I also experience headaches from different foods.

Other Physical Issues

I live a healthy lifestyle and exercise multiple times per week. I am also aware of certain exercises that cause me pain, so I intentionally avoid them.

I have cysts that can rupture, although it doesn't happen as often as it used to. When they do, the resulting symptoms and pain can be severe enough to leave me almost completely debilitated for several hours and sometimes for up to a week and often puts me in the hospital for pain management.

Testing and Things I Have Already Tried

I have had:

- Multiple types of blood tests
- MRIs
- CT scans
- Abdominal imaging
- Ultrasounds
- Exploratory surgery (several)
- Colonoscopy (several)
- Endoscopy (several)
- Stool samples
- Consultations with surgeons
- Consultations with multiple specialists
- Evaluation by my gynecologist
- Functional medicine
- Homeopathic medicine
- Multiple food-related interventions and elimination diets
- Investigation into possible psychosomatic causes
- Consulted with two allergists

I have tried looking at this from both physical and psychological perspectives because I genuinely wanted to make sure I was not overlooking anything.

Conditions I Do Not Have

I have been evaluated for several conditions, including:

- Crohn's disease
- Colitis

I do have endometriosis, which was surgically burned off approximately four years ago.

Surgical and Procedural History

My surgeries and procedures include:

- Appendectomy — performed after my appendix had been left untreated for approximately three years
- Wisdom teeth removal — resulted in nerve damage; I have permanent sensory changes involving my gums and tongue and can only taste normally on one side
- Tonsillectomy
- Esophageal balloon dilation — required because of an injury/reaction associated with the tracheal tube during my appendectomy
- Adhesiolysis — performed because of adhesions resulting from previous surgeries
- Endometriosis surgery — endometriosis was surgically burned off approximately four years ago

Where I Am Now

At this point, I know that I have significant intolerance to gluten, eggs, and dairy, but this seems to be much larger than those three foods.

My body has progressively become sensitive to things that previously caused no problems. Foods such as salmon, avocado, and sweet potato have become triggers, and even liquids such as coffee can now cause stomach pain.

I continue to experience episodes involving severe weakness, loss of muscle strength, difficulty walking, difficulty speaking, difficulty holding my head up, abdominal pain, nausea, dizziness, vertigo, headaches, and other systemic and neurological symptoms.

Sometimes my stomach will hurt out of nowhere

This has been going on for years and I still do not have an explanation that accounts for the full picture.

The most concerning part is that the symptoms continue to progress. Things that were once completely safe for me are becoming triggers, and some reactions have become severe enough to leave me almost completely debilitated.

I am at a loss and would really like help looking at my entire history together rather than treating each symptom individually. I am hoping someone can identify a connection between these symptoms or determine what additional evaluation or testing may be appropriate.