wow! saw my eye specialist again today

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 1, 2003.

  1. tansy

    tansy New Member

    and what a change from the usual scenario.

    She was great last time, Today they rechecked my eyes and did a field test. Results showed some areas of concern but she feels most of my problems are "brain" related.

    Anyway we got to chatting about ME/CFS, she knew about transfer factor and more. Asked if I was getting help on NHS, when I said "no" she empathised saying she thought that would be the case. They're all getting very fed up with trying to do their jobs without adequate resources.

    She recommended a really good optician, that I was to mention her name because she'd be writing to him to see if they could get a prescription and prisms that worked better.

    I thought that would be the last time I saw her, that's usually what happens in the UK with these DDs. But no. Because I'm having so many problems seeing well enough to use my camera properly she wants to see what she can do to help with that. So I have to take it in with me next time.

    She also wants to keep a check on how things go over time, even though my visual problems fluctuate so much.

    After 22 years of this illness she is the first hospital based doctor who has really tried to help. It might not be the most major of my problems but it just feels amazing to have even just this addressed.


  2. tansy

    tansy New Member

    Well first of all I have chronic blepharitis for which I use a wash with bicarb. That's just annoying if it flares up too much, understand why they refer to it as sandpaper eyelids.

    But the reason I was referred is it's got harder to focus and I get a lot of double vision.

    My dominant eye is worst and very uncomfortable. Felt like muscle spasms and I do get visable twitching quite often. Turns out the back of the eye is jittering around which makes sense of how some of it feels. Other than that the muscles are weakening more than they should and not working that well (great!), she insists the usual exercises would just make it worse, as would the surgery they sometimes use.

    I often remark that it feels like I have very seperate sides of my body, the left is slow and more difficult to coordinate, the right seems more twitchy generally; not so different from what they have found in my eyes.

    Oh what fun we have.


  3. Applyn59

    Applyn59 New Member

    That's wonderful about that dr. Sounds like a keeper to me! Must feel really wonderful to find a dr. who
    actually cares about YOU!

    A few years ago the eye dr. I used to go to left town
    so I went to the one who had an office in the store
    of the optician that I loved. The optician always treated me amazingly and gave me discounts, etc.

    The eye dr. was just horrendous to me! First of all,
    the office is in a very affluent town about ten minutes
    away from me. I had worn contacts in the past but hadn't worn them for years and years. I asked him
    to check me for those too. He got me a pair and I couldn't see with them. The one in the left eye was very uncomfortable and caused pain-which he did not believe. He said the axis was slightly off, so he ordered me another one. It was more comfortable but I still couldn't see. He said that he could order different ones but he thought it was ridiculous to try because he said it wouldn't make any difference in my vision with both eyes open. He proceeded to tell me that
    I was a perfectionist chasing a dream and that he doesn't usually charge for extra fittings when he believes there is a problem but he would charge me. I have
    astigmatism in both eyes but I have worn contacts
    in the past. Contacts come in many different levels
    and the ones he tried on me were in large increments.
    There were other brands that he could have tried that
    had 1/4 increments instead of whole numbers.
    I told him that I did not think it was too much to ask
    to be able to see clearly with my contacts and that
    I could not read the poster behind his head. He
    was just awful. He then said, "I have worked in
    prisons with convicts and they always knew who
    the boss was. This is not vision corner and I do
    not need patients." He charged me $100 dollars
    extra for the contact lense fittings. I have never had
    an eye dr. do that before and I have never used
    Vision Corner (a chain of eye places). I was crying
    and my back brace was making me need to vomit
    so I had to excuse myself and go into the bathroom
    because of this. Do you think he felt bad at all?
    Of course not! I was crying and so hurt. He
    treated me like I was an imbecile and was
    very nasty to me. I can't believe that I was dumb
    enough to pay him. He knew that I was on ssdi
    and medicaid, too. I sent him a long, polite,
    letter after regarding his attitue and how he only
    cares about money, etc.

    I am good friends with the optician (the eye dr.
    is not affiliated with him; they both rent the same
    storefronts). The optician was very upset for me
    when I told him. He called me up and told me
    that the eye dr. actually went over to him and showed
    him my letter. I was surprised the jerk would even
    do such a think. I can't remember what the optician said but is was something to the effect of the
    letter making the guy feel small. Can't remember.
    I can't tell you how long after that that I was really
    upset. He really made me feel horrendous.
    He knew I had Fibro and had just treated another
    person with it earlier in the same day.

    I then found a new eye dr. who treated me much

    Anyway, I am so happy that you found someone
    so wonderful. It goes along way in this difficult
    life of miserable rotten drs! LOL

  4. Applyn59

    Applyn59 New Member

    bumping for Tansy!!!
    Such a great dr. I hope you tell her how
    odd it is to find someone as wonderful as she is.

  5. tansy

    tansy New Member

    Sorry to hear about your problems with an eye specialist. Seems an all too familiar encounter.

    Yes I am going to write to this specialist, thinking about sending a copy to the CEO of the Hopital Trust and the Department of Health. As I improve I have every intention of being a thorn in all their sides. What's more I don't bleive one can complain if not also prepared to praise when rlevant too.

    Brain's gone really weird at the moment, perhaps things are just settling down from the hot weather, it's really difficult again to write even posts, thought I was doing remarkably well for me. My balance has gone completely and it's very swimmy all the time.

    Oh what fun we have.

    They can't provide a prescription that'll work all the time since like many of us the results are different depending on when they are tested.

    But she did think all that could be done should be and that they need to do the best they can to get the astigmatisms corrected as usefully as they can be.

    Like my GP she's not up on ME/CFS but she sees her role as helping me if she can.

    Such a change from the "go away, take antidepressants and learn to live with it" attutude I've had from most NHS doctors since 2 hopital episodes left me in an even more dreadful mess.



    [This Message was Edited on 07/02/2003]
    [This Message was Edited on 07/02/2003]
    [This Message was Edited on 07/02/2003]
  6. tansy

    tansy New Member

    I will look it up on the site you recommended.

    I do get a lot of annoying spasms and not just in my eyes, just hoping they calm down once I start to make some improvement.

    It's difficult getting anything investigated or treated here if you have cfs, which is why this eye specialist was such a breath of fresh air.


    [This Message was Edited on 07/03/2003]
    [This Message was Edited on 07/03/2003]
  7. pinkquartz

    pinkquartz New Member

    so like you my eyesight is very precious though I don't have the severe problems that you have.

    i was dismayed last year to see that my sight was deteriorating more rapidly. i am shortsighted...i can see less than friends and daughter even when i am wearing my glasses. At times my eyes seem to get soswimmy and everything so out of focus my brain just didn't register what i can see.

    after a visit to the optician he said that i had a sort of rapid aging going on.....and the problems were due to the eye muscles being slow in altering when i look long distance and then closeup.
    He recommended varifocals , which i can't afford.

    It has affected my ability to take photos cos i can't see accurately enough like i used to but its not too bad... i sort of hope things will improve when the rest of my body does !
    Also i am considering doing my photos more the margaret Cameron style.....out of focus therefore as a legit style ;-}. or a sort of impressionism done in photography.

    i hope you get the help needed....and some pain relief too.

    love, pinkquartz