A Lifetime of Being Disbelieved

10 years ago I was diagnosed with progressive systemic sclerosis, SSc.

They thought I was a hypochondriac

For many years I've suffered with severe gastrointestinal issues, and for years I was treated like a hypochondriac. I had to be making it up since most of the tests could not pinpoint the cause of my pain.

I have a “jackhammer “ esophagus but that was only part of the pain. Severe GERD had plagued me for years, but it isn't the main part of the pain. Gallbladder pain had me doubled over, but my gallbladder only had sludge and according to my GI, not the cause of my pain.

Neither treating inflammation or surgery helped

Eventually, I saw a surgeon who agreed to remove my gallbladder. The pathology report indicated that I had chronic inflammation, aha, finally I had my answer. Only my pain never stopped.

I was unable to eat much because of the pain. I was given a swallow test, it was inconclusive. Finally, I was given a test to check on the overproduction of bacterial gas. I had 2 TIA’s, and a stroke.

I lost a lot of weight in a small period of time. Nausea and dry heaves accompanied by violent, painful burps. I'd had chronic diarrhea for three years, but my GI was not concerned.

A diagnosis was dismissed

The bottom was when I was admitted to the hospital, my hospital doctor was the one who tied my GI issues to the scleroderma. At last, I had an answer, only the next hospital doctor said that I didn't have anything that she could treat and threw me out.

Before I was hospitalized I was given 2 antibiotics to combat the overgrowth of bacteria in my gut. By the time I was thrown out, I had finished them.

Life-threatening emergency lead to 3-week hospital stay

A week later, I had labs due, so I went with my husband to the lab. 5:00 am the next morning I was called but I was unable to answer it. Eventually, they called my husband, my hemoglobin was under 7, and my glucose was 35.

I was immediately admitted and life-saving efforts were employed. I don't remember much, but it was a fight for my life. I was scoped to place a feeding tube, only it wasn't possible. I was there for 3 weeks, every day a battle.

When discharged, I was hypoglycemic, malnourished, I had malnutrition, hair loss, I was sporting a PICC line, and getting TPN every 12 hours for 12 hours. I will be on TPN for the rest of my life.

Living with the complications of delayed diagnosis

I have Raynaud’s syndrome which makes my hands and feet painful. Now I have finger ulcers which have turned gangrenous, and painful toes. I have no appetite, and still can't eat much. The joint pain is excruciating, unfortunately, I'm allergic to opioids and NSAIDs, so no painkillers.

The uptick is that a scleroderma specialist has agreed to see me next week. I have hope that he will be able to help me.