When I was a child I developed an unknown lacrimal disorder in my right eye. My mother took me to many doctor’s and specialist to find a reason for what was happening and none of the doctor’s could figure out why I was losing tear production, especially because it only affected one of my eyes. I was tested for every disease that was known to cause problems with tear production and everything came back negative. I suffered from constant pain, infections and ulcerations of my cornea for years. I finally lost all tear production in my right eye and In 1992 I had to have my eye enucleated. I was never able to get a diagnosis. A few of the doctors had some theories which included; that I would develop a disease later in life, that chicken pox had gone dormant in the tear duct of the right eye and that I might possibly have herpes zoster’s. I was even accused at the age of 13 by one of the doctors of doing cocaine because they could not figure out why my eye would not heal with aggressive treatment. When I had my eye removed my eye literally exploded before the doctor could even remove it. The infection had spread to the inside of my eye and was eating its way out. The doctor ran biopsies of my eye and told my mother he had never before encountered an infection like this. I had to have a total of 7 surgeries on my right eye because it would not heal after surgery.
I am now 36 and 2 years ago I started losing tear production in my remaining eye. I now have a 90% decrease in tear production and my vision has gone from 20/10 to 20/70 due to the dryness. I have also developed an array of symptoms in the last year and I am terrified that I am going to lose my remaining eye or worse if I don’t get some help. I have seen countless doctors and specialist and they still can not figure out what is wrong with me I am desperately trying to find some answers. I am a nurse and I have been unable to work the past year due to my health and normal daily activities are becoming more limited.
I have been diagnosed with the following:
Lacrimal disorder (unknown cause)
Hypokalemia (falls to life threatening levels and is unknown as to why)
Anemia (unknown cause)
Hypolipidemia (uncontrolled with meds)
This is a complete list of the symptoms that I am suffering from.
2. Abdominal pain (associated with eating. Affects lower abdomen and sometime upper left side)
4. Heart burn
6. Impaction (regularly)
7. Cold feet and hands with red blotchy marks on my legs (not related to my neuropathy)
8. Burning pain in inner thighs
9. Dry eyes/mouth
13. Muscle weakness
16. Failure to thrive when I was a child
17. Lacrimal disorder
18. One sided parotid gland swollen (did not have mumps or blockages)
19. Difficulty swallowing (I choke a lot, even on my own saliva)
I have been to see the following Dr.’s and specialist:
Gastroenterologist- had 2 barium enema – both negative (having colonoscopy done in March)
Endocrinologist-had too many tests done to mention but all were negative
Ophthalmologist- seen many different ones still undiagnosed
Rheumatologist-had too many tests done to mention but all were negative.
Neurologist-Positive for peripheral neuropathy & carpal tunnel
Cardiologist- Positive for CAD, had two stents in the LAD within one year.
Vascular Surgeon- all test done so far have been negative waiting to have more done later this month.
Oncologist/genetics specialist-still having tests done, so far all negative
ENT-all tests negative
Gynecologist-have some type of mass on my left ovary Dr. says it is a cyst but radiology records show that there is no fluid inside. Seeking second opinion.
I am currently taking the following medications:
Ferrous sulfate PRN
Potassium QD 40 mg TID
If there is anyone out there that can help me I would really appreciate it. I am scared, I am in constant pain and I am losing the quality of my life and I am only 36 years old.