[Anonymous May 3, 2004 at 5:50 pm Post count: 93172]

#1023536

Hello,

Finally after a long wait, I had my appointment with an
opthamalogist/occular/reconstructive/cosmetic surgeon. Thanks! to all on here that advised on getting a very skilled eye doctor. He did all the test and said that I have a very mild case of TED, and he thinks that it is on it’s way to burning out. My problem is that on this day I had a good eye day my swelling was down, and I did not have the prominent left droopy eye. If I have a mild case of TED, I do not understand where all my eye pain is coming from, deep pain and headaches that make you want to take everything you can find for pain
and just go to sleep forever. Reading the time frames that are found on here about TED makes me suspicious that my TED is just starting out. I was diagnosed with graves, after a thyroid storm that landed me in the emergency room last August 2003. I had RAI in November of the same year, this is when I started having eye trouble, feeling as if I always had something in my eye and watery eyes and little aches in my eyes, now the swelling and pain is unbearable. My question is to the veteran warriors of this horrible TED stuff is can I just be
starting out or on the way out ? I just feel as the Doctor really did not take my case as serious because I did not have such outward physical signs. He did keep refering to other patients more affected in a cosmetic sense. I just felt like that since I was not a candidate for surgery I was pretty much dismissed. Any help would be appreciated. I apologize for this long post, but my pain and and all the other symptoms that I have with TED, and graves seem to be not real in
the Doctors eyes, even with my Endocrinologist, they keep telling me that graves can not give me all the pain and crazy symptoms that I have since being diagnosed with graves. I did buy the book Graves in our own words. I love this book! great information and has made me feel as if the Doctors really do not fully understand this disease and that we DO! experience so many different ailments associated with graves. I know that I did not have any of this until I was diagnosed having graves. They were not interested in reading my book. Thanks! for letting me vent. I just am having so much pain, and a very difficult time with this disease. I feel as if I am going crazy. My coworkers/friends and my doctors make me feel as if I am making all this up. I am
so glad that I have this place to come to. You all have been wonderful
providing information on what it really is like to have this disease. I am truly thankful that my eyes have not been affected as cosmetically as this TED stuff can cause. My heart does go out to everyone that has to be so affected by this cruel disease. We are all brave warriors, just trying to cope with day to day pain and everything else that happens to our bodies with this. God Bless! you all and my thoughts and prayers go out to each and everyone here. I just wished that more study/understanding and research were given to graves. Here’s
to crossing my fingers and keeping faith, that one day this will happen. I am very dissapointed to know that the support group in my area, that I signed up for is no longer active. I was so hoping to find people I could talk with and to help each other along. So far I have had to have an emergency gallbladder removal, and one diseased ovary removed, kidney stones, sinus surgery, cryo surgery on my cervix, and medication for terrible anxiety attacks, hyper and then hypo and vice versa, Arthritis and my medication has not balanced me out
as of yet. Thanks! again for being here and I do apologize for such a long Woe is me! but with all this, I find it very sad, that my coworkers/ friends can still be cruel and envious that I am on my second short term disability, saying hurtful remarks as you are really a case! and you have some messed up genes! all the while snickering. I still will never wish this disease on anyone, no matter how hurtful people can be. I also find it amazing that the many doctors that I visited over the years, never found out what was wrong with me until I took myself to the emergency room, that night in August, however they all acted surprised! that I was so young to be having all this trouble that led to all my surgeries. I even told them that graves runs in my family. Take care everyone and stay kind to yourselves!

Frances43

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