[Anonymous May 12, 2000 at 9:16 pm Post count: 93172]

#1126429

Hello Bitter,

I was not insulted just letting people know that there is help out there and not all doctors are uninformed. I was undiagnosed for at least three years. I went to my GP for eye infections. Was told it was allergies. Given drops and such. When I was diagnosed the first thing the ER doctor told me was I had proptosis and probably Graves’. Turns out he was right. It depends what type of doctor you are seeing if they will make the connection.

After I was diagnosed I was talking to a classmate who was a doctor. Told him I was diagnosed with Graves’ and he said “Sure”!! Turns out he and another classmate who was an ER doctor had talked about my Graves one night when they were on call. Because we only knew each other from class the topic never came up. Both knew TED just by looking at me.

That is why it is important to see and Endo and and eye doc. They know what to look for. There are many good internists and GPs out there but go for the specialists (in my humble opinion)

Jake
On-line facilitator

[Anonymous May 12, 2000 at 11:55 pm Post count: 93172]

#1038891

Hi Jake,

Yes, I was misdiagnosed by about six doctors, including a top-notch allergist in my state. This went on for six months, doctor after doctor. When I told this to the “guru of TED”, my opthalmologist, about this problem, he is the one that said most doctors are “uninformed”. This is a direct quote.

If I caused anyone not to seek help, I did not mean to. Maybe I’m just a little disgusted, as one would naturally be if they were in my shoes. Maybe my eyes would not have deteriorated so rapidly if I had been diagnosed earlier, who knows. Of course, that is only speculation on my part.

What I really wish is that doctors would read this bulletin board. When I first discovered your board, I read the whole first page and cried and cried for over an hour. The money and studies that have been put into Graves disease is paltry at best. With this new thing called the “Net”, maybe more people will be able to see how many people are suffering, thereby more money can be put into scientific studies for a cure for this insufferable disease. No one, but no one, understands what we are going through but us. Not our friends, coworkers, spouses, etc.

I am glad to be able to read about people who are suffering, like myself. It helps to know that “I’m not the only one”. Everytime something new happens to me, I freak out. If I can read about other’s symptoms, I will know when those symptoms are mine. Even though I don’t like being on the computer a lot, I am finding myself turning to this board frequently.

If I insulted you, I didn’t mean to. (would you mind if I blamed it on GD???)

Thanks,
Bitter

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