-TED comments and questions

[Guest guest]

Hi, ,

I saw what TED did to your eyes and can only imagine how hard it is for you.

My friend, in an effort to make me feel better, said to me that at least it

is not a disease that is life threatening and I appreciate what she means but

the eye disease and the potential weight, fingernails, and hair loss issues

are a definite and cruel strike on our self esteem which can not be measured

with a test.

Have you done anything at this point to correct the damage to your eyes? I

am interested in the eye disease because even though the odd are with me, I

am fearing the worst. The eye doctor I went to a few weeks ago said I have

double vision in the left eye on the upward gaze. Although my husband swears

he can't see anything, today I noticed that my left iris is " sitting " a

little higher than the right. It is very slight suble but I'm sure it's

there.

I read in Elaine's book that the hot period when the disease usually

progresses and worsens during a 3-6 month period and then it can stay that

way up to 5 years. I take it to mean it doesn't get worse after 6 months.

Was this the case for you? Also, did you get your symptoms rapidly or did

they come on slowly? I read that steroids are used during the hot period to

prevent scarring so now I'm wondering if I should look into that now before

it possibly gets worse.

I've just made an appointment for a new eye doctor. Although my endo highly

recommended the first one, in retrospect, I don't think he is for me. First

of all, he sloughed off all my questions with , " Don't worry about anything,

live your life " and secondly, I had a slight bump (a clogged gland) which

was unnoticable and after he felt it he flipped my eyelid and poked it with a

needles about 6 times to drain it without even telling me before he started.

Not only was it painful but my left eye, which had up to that point gotten

so much better on the Tapazole, started up again immediatly and only recently

has begun to feel somewhat better. I just read somewhere that any trauma to

the eye can trigger a problem in the autoimmune reaction in TED. Finally, I

looked up a Mayo Clinic site that lists doctors in the American Society of

Opthalmic Plastic and Reconstructive Surgery, and he is not on that list.

Not that it's the end-all but I'm turned off of him now.

I feel like so much of time, unlike ever before, is spent on this computer!

But I can't walk past it without being drawn to it and reading the posts so

as to not miss anything. It has offered such a wealth of info which in turn

has aided me with Grave's and it's insidious side effects.

Can you give any tips on how you've learned to cope with TED? Have any of

your eye syptoms gotten better on their own? You are so brave to have

endured after what you've been through.

Thank you,