Discussions By Condition: I cannot get a diagnosis.

Please help

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: lilwhitepaws
  • February 20, 2007
  • 10:15 AM

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:

Peripheral neuropathy
Lacrimal disorder (unknown cause)
Carpal Tunnel
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.

1. Constipation
2. Abdominal pain (associated with eating. Affects lower abdomen and sometime upper left side)
3. Belching
4. Heart burn
5. Flatulence
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
10. Polydipsia
11. Polyuria
12. Fatigue
13. Muscle weakness
14. Nocturia
15. Nausea
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.
Multiple MD’s
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:

Plavix QD
Aspirin QD
Metoprolol QD
Neurontin PRN
Niaspan QD
Suldinac PRN
Midrin PRN
Crestor QD
Flexeril QD
Ferrous sulfate PRN
Potassium QD 40 mg TID
Fioricet PRN

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.

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2 Replies:

  • 7. Cold feet and hands with red blotchy marks on my legs (not related to my neuropathy) ~~This can be Raynauds.9. Dry eyes/mouth ~~This can be Soj{g}rens {sp?} You don't say if you have been tested for Lyme disease. The above two symptoms, are linked to Lyme and Thyroid. You don't have to remeber being bitten. Some people I have encountered , trying to get well have had alot of the problems you have. I have alot of the symptoms you have. Took me 20 yrs to get the right dx. Lyme disease Do some google searches. Best wishes.
    Anonymous 42789 Replies
    • February 22, 2007
    • 01:55 PM
    • 0
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  • Thank you so much for your response. I have been actively involved in my own care and treatment. I have a bit of an edge then most because I have been in the medical field for about 20 years. I just got back from the Dr.’s a few hours ago and I discussed with him the possibility of Reynaud’s phenomenon as well as Sjogren’s syndrome. I have been doing a lot of research on the symptoms I have been suffering from and I have all of the symptoms of both diseases. I started having problems as a young child with the tear production in my right eye. I was tested for these diseases as a child but nothing came back. Recently my mother remembered taking me to a rheumatologist when I was a child and remembers that he had told her that there were 3 diseases that he felt I could come down with later in life. I contacted that Dr. and obtained my medical records and Sjogren’s was one of the diseases he mentioned in my records. I have so many different symptoms, seemingly unrelated, but once I started to research Sjogren’s syndrome I realized that every problem and symptom I have can be linked to this disease. My only concern now is that if I have this disease that it may have progressed to a point where I could be in serious trouble with my health. There are times when I am so sick that I whole heartedly feel as though I am dying. If the loss of tear production in my right eye was due to Sjogren’s, then it has gone undiagnosed and untreated for 26 years. I have been researching the prolonged effects of untreated Sjogren’s but I have not had much luck in finding anything yet. Thanks you so much for your help. I will mention Lyme disease to my doctors as well just in case this doesn’t turn out to be Sjogren’s.
    lilwhitepaws 5 Replies
    • February 22, 2007
    • 11:13 PM
    • 0
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