my medical problem, please advise me

  1. hi all. i am very frustrated and scared. i thought maybe someone has heard of my type of problem and can't guide me. I've been to numerous eye specialist and they all give up on me feeling puzzle. these are the symptoms:
    - for the last 17 years i have been progressively photophobic, Doctors write on their reports "extreme photophobia" they tell me they have not seen this even in the 90 year old with sever catarats problem. i can't take the sunlight or cloudy day light in the morning even with sun glasses, my eyes begin to tear and i can't keep my eyes opened. i have to pull over when i am driving and give myself a few minutes to recover. i am also sensitive to the lights on cars when i drive at night, bright lights at stores and so on.
    _ on the other hand i need a lot of light in order to be able to read.
    - I am using reading glasses for the last 2 1/2 years and for the last 6 months i've noticed that the prescription does not last long. i got a new prescription for glasses sometime in oct or nov last year. in january i had to get a new pair and now as i write this i feel as if i need a new prescription.
    _ i feel that i have to blink my eyes over and over when i am writing or reading trying to refocuse. it is almost as if my vision is tired or blurred. i am not even sure what it is. one doctor told me over a year ago that i have catarats ( i was then 42 years old) her prescription was not acurate so i did over the counter glasses for a while. then went to a very well reccomended especialist. he like every other MD was not able to examine my eyes b/c i can't tolerate the light ever for a point of a second. i got an MRI that was normal, my blood work is usually perfect, no medical history of diabetis but hypoglycemia (went down to 20 on my sugar during a 5 hours glucose tolerance test) the last MD i saw was talking about putting me to sleep so he can examine me. my luck, i changed insurance and he does not work with the new one. i am sooooo scared thinking that i am going to end up blind. i like reading my nursing journals, and was planning to take classes this summer and fall towards my bachellors in nursing but i can't read for one minute straigh without having to stop to refocusse, blink and a so on.
    please help me. have you heard of something like it? all the doctors but the last one have given up on me. any suggestions? thank you, MOnica
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  2. 13 Comments

  3. by   boggle
    Hello Monica. How frustrating and frightening! I am not familiar with your type of eye problem, but if you were my relative, I would suggest you get a referral to a major university medical center or other major/ research hospital for another evaluation.

    What region of the country are you from? I know in the midwest, I have known difficult eye problems to be referred to University of Michigan, Mayo in Rochester Minn., and to the Cleveland Clinic in Ohio.

    Good luck to you. I hope you get a diagnosis and relief soon. Please keep us posted.
  4. by   P_RN
    Hi Monica. You sound just like my husband! Do you by any chance have blue eyes? He also has DM and mild glaucoma, but those came much later than the photosensitivity. He can't tolerate even a night light in the bedroom. His glaucoma ophth. said his pupils contract slower than most people. He always uses the numbing medicine....pontocaine? for slit lamp exams and my DH is griping and wincing the whole time. I have brown eyes so I can only sympathize not empathize with him.

    P
  5. by   wrkoutgirl
    hi guys, thank you for your replies. to answer to your comments i will tell you, boggle that i saw two especialist at newark University Hospital. two doctors sent me there in two separate occasions. both doctors gave up on me. my bigest fear now is the short period of time that my reading glasses last before i need a new prescription and how it is interfereing with my need to read my nursing journals and so on.
    Now to answer to you P RN, i hate to tell your that i don't have blue or green eyes. i am latina and have dark brown eyes. i heard about ligher colored eyes people are very sensitive to light but unfornally that is not my reason. i am so scared! thank you again. monica
  6. by   RN30years
    oh wkout grl Find another specialist as fast as you can something is very wrong for you eyes to be failing so fast. get on the web and do some research if you cant see well enough to do this ask a friend or family member. good luck
    It is dreadful that 2 specialists would give up on you!!!!!!! be pro active and demand more from them if they are truley eye specialists they would never give up until they have an answer :uhoh21:
  7. by   nurseygrrl
    I do not have any advice for you, but I do wish you the best of luck. Keep trying until you find a doc who is willing to help you. Maybe you can ask the doc who no longer takes your insurance to refer you to someone who does, who the first doc respects.
  8. by   KeniRN
    Hi wrkoutgirl. I'm so very sorry you are going through this! you mentioned Newark University Hospital. Is that in Newark New Jersey? If so, do you live in New Jersey or the Tri-state area? Maybe a visit to a specialist at Wills Eye Hospital in Philadelphia. Best of luck and if you don't mind, I will put you in my prayers
  9. by   Uptoherern
    have you seen a retinal specialist?
  10. by   docnapiv
    I think you really had to be put under sedation in order to have a thorough examination of your eye. This will rule out any anatomical problem with the way your eyes accomodate bright light. Sometimes it has something to do with the shape of the lens, or a faulty accomodation reflex. If some specialist say that you have a cataract it means a change of lens is indicated and could solve your problem.

    Anyway I hope the doctor will find out what is wrong with you, for I could emphatize with the way you feel.My advise is for you to never give up in looking for a specialist that could solve your problem or at least minimize it.
  11. by   plumrn
    I'm so sorry! I know you are scared. I agree with all above. Keep looking until you find someone that will stick with it. Maybe you could post to medical forums (geared to physicians) where there might just be a doctor somewhere, that knows someone that can help you. Best of luck, and my prayers are with you. Please let us know how you do.
  12. by   P_RN
    Gosh I had hoped that the blue eyes would solve the problem. Have you been to an internist in addition to the ophthalmologists about this?

    Some of the inflammatory and neuromuscular processes have eye problems as components. I have had optic neuritis 3 times now and lost vision in my left eye. Fortunately I haven't had a flare in several years now.

    In any case keep lookingfor a doctor. Could you ask your insurance for a waiver on the doctor? Please keep us updated.
  13. by   Hellllllo Nurse
    I am photophobic, and have difficulty focusing and reading, but I don't think my difficulties are as severe as yours. I have blue eyes, and have the eye disease keratoconus.

    Maybe you have a severe form of keratoconus????

    It tooks years and quite a few doctors for me to be properly diagnosed.

    I agree with the other poster who recommended you try to be seen at a major, teaching hospital.
  14. by   lsyorke
    Wills Eye Institute is a wonderful place. My husband had surgery there years ago. Excellent physicians.

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