Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 eyes > > > Hello to you all, > > here I am again with a new question. > For about 3-4 weeks now I see everything a little misty. I hope you understand me. > I thought that I had been too busy during December. But now everything is normal again I still have it. > > My bloodtest in December was perfect. > I went to an optician, but my glasses are fine. He only recommended a pair of glasses for reading.It enlarges a bit, but still a bit misty. Is this also something due to Graves? Should I see an oculist? > I phoned my specialist today, but he didn't know any connection with Graves.............. and advised me to see my family-doctor. > > Can someone help me? > > > Thanks, very much,and all the best to you all. > > > Ellen de Vries > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 I don't know if we have the same eye problems. I know the following information. Most common symptoms Aversion to light Redness of eyes Protruding eyes Swelling of upper eyelids BLURRED VISION (emphasis added) Watery eyes Sore eyes Gritty sensation in eyes Aches behind eyes Dry eyes Poor night vision Eye pain when you move around Flashing lights Less common symptoms Double vision Reduced sight in one (or two, rarely) eyes Reduced color brightness Swelling of lower eyelids Per Dr. Arem, " The Thyroid Solution " by Ridha Arem, M.D. Elaine Researching Bohemian Surnames S L E P I C K A and H R U S K A Re: eyes > > > Is your specialist that did not see a connection with eyes and Graves an > endocrinologist? YES > Has he ever taken measurements of your eyes during an > examination?NO > Do you have an ophthalmologist (MD specializing in eyes)?NO eye problems " same as I have?? " <snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 > From: shen@... > > With all the recent posts on eye issues, I'm getting a little worried. My > eyes have been mildly hurting for 2 mos. now. When I told my doctor, he > said it was not thyroid related, was probably the Santa Ana winds, and for > sure I did not have thyroid related eye problems starting. However, my > eyes hurt wind or no wind, and I can't see as well as I used to. No > swelling though. Can someone please advise? This is exactly how my eye problems started: I was hyperthyroid (but didn't know it) for a couple of months and my eyes started to ache, sort of like a headache behind my eyes. They hurt for a few months before I saw visible changes in the eye and changes in sight. My eyes progressed to a point where one was bulged and swollen, the other lid so retracted I had to tape my eye shut at night. Now, my eye problems are gone with the exception of dryness and pain, sometimes considerable pain. So, go to an opthalmologist -- but only one that specializes in Graves. I actually took my health care plan directory and CALLED twenty opthalmologists, asking if they had experience with Graves and if not, could they recommend someone locally. Four of them all gave me the same name (also in the book, but way down in the W's) of a professor at the University of Minnesota, who I did see. Whatever you must do, find an opthalmologist who specializes in Graves or other neuro eye troubles. The guy I see is a neuro-opthalmologist. Try not to worry. For the vast, vast majority of people, dryness and pain and some moderate troubles like blurriness, lid retraction, etc. are the full extent of eye troubles; generally, most of the eye troubles tend to wax when your hormones return to normal. just a handful -- I think it's 5% or something -- the eye troubles become more severe. Anyone who gets to the point of taping their eye shut, as I did, is a little more on the severe side and even this went away. I'm extremely grateful for that ! But That probably won't happen to you. BUt it is important to get a good baseline exam and establish a relationship with a doc in case something DOES happen -- if there's an emergency (and eye problems can have emergencies) you want to already have seen a doc and have someone to call. Finally, the thyroid related eye disease generally runs a course of 6 months to five years -- then it stops progressing but doesn't get better. You can get the thyroid eye disease ANY TIME after a Graves diagnosis -- now, next year, twenty years. Again: the majority of people experience mild to moderate problems that tend to greatly improve or disappear altogether within a few months to years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Thanks for the advice, will call Endo for referral today. At 07:59 AM 01/14/2000 -0600, you wrote: > > > >So, go to an opthalmologist -- but only one that specializes in Graves. Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 I think the eyes are so much a part of the Graves problem that they must always be considered. Using a tears replacement helps. Don't use a product that is designed to *get the red out*. I actually have TED and have undergone radiation of my eyes followed by a short period of prednisone, to reduce swelling and correct a tendency to double vision. But the dry eyes remain and there is a slight difference in lid lag between the two eyes. Be sure to use an ophthalmologist rather than an optician for following the status of your eyes. Elaine Researching Bohemian Surnames S L E P I C K A and H R U S K A eyes > From: Freedoverc@... > > Have any of you experienced, burning eyes? By the end of the day, it feels > as if someone has taken a ton of sand and thrown it in my eyes....it's only > in the evening that I experience this. Anyone else?? > > Jewls > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/2/_/585824/_/952660133/ > ------------------------------------------------------------------------ > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 Yes I've had burning eyes for years. They are very itchy too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 I've also had angle closure glaucoma, which I swear is connected to my sarc. normal eye pressure is 14 15, 16, 20 is high normal. The pressure in my eyes got to 96! This is the point at which the inside of the eyes, the vessels and the optic nerve, actually collapses into itself. If there is ruptures of the vessels in the area of the macula, you loose your central vision, as well as color and contrast sensitivity. If it's in the retina, it can actually warp the retina and make it so that you don't have a nice even surface for the signals to get thru the optic nerve to the brain and so your brain doesn't know what it's seeing. felt like my eyes were going to blow right out of my head. -- I saw so many patients come in with pressures like yours, and they had lost all vision forever in that eye. The nausau and vomiting you spoke about wasn't from the medication they had you drink, it was because your eye pressure were so high that they gave you a super fast diuretic drink to bring all the pressures thru your whole body down. It makes you think you have the flu, and you end up sicker than a dog-- but it saved your vision. I used pred forte etc. The predforte was to bring the inflammation down-- sounds like you had iritis and uveitis also. It's the inflammation in those areas that cause the glaucoma, because when they get inflammed, they can't get the pressure down. I had to have them open them with a lazer. What you had was a laser iridectomy, where they use a laser to burn a small slice of the iris so that any adhesions to the pupil where eliminated. That made it so that the iris could open and close freely, pumping away the intraocular pressure that was so high. , you are so right, your sarcoidosis and your problems with your eyes is directly connected. Even though you can have glaucoma without sarcoidosis-- almost 30% of all the people with sarcoidosis will have problems with iritis, uveitis, and glaucoma. I'm going to put together something that will also explain the optic neuritis--inflammation of the optic nerve, that effects many of us with NS. It's a coming Ish--honest it is. Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Hi I'm home finally from a continues travel... Home feels sooooo good. I see you are all talking about eyes. The eyes is a huge problem for me. Believe me is is one of the most miserable symptoms as far as uncomfortable horrible feeling. I've also had angle closure glaucoma, which I swear is connected to my sarc. normal eye pressure is 14 15, 16, 20 is high normal. The pressure in my eyes got to 96! felt like my eyes were going to blow right out of my head. I used pred forte etc. I had to have them open them with a lazer. I had to drink some gross syrup mixed with soda. And then I went into shock and threw up for so long ,they had to give me shots to help me quit. I have to re wet my eyes several times in the day I have plugs in . I wake up in the night and must rewet them my eye lids are stuck to my eye balls. I have a new drug out called sustain for my eyes. I also use a special acid mixed at a specialty pharmacy for my eyes. And I also use another special drop that has some oil in it the eyes need............. It still is a horrible issue to constantly having to deal with. M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Ok, now I have palatal myoclonus, and as part of the myoclonus family sometimes the eyes can be affected with palatal stuff, but that is usually diagnosed as " Opsiclonus Myoclonus " Sooooo.... what is it when you are reading stuff you wre writing (with a pen) and your eyes keep rolling upwards? (And no this is not common for me.) I don't think it is seizure relate, but it could be myoclonically related. Anyone got a clue? >> I'm going to put together something that will also explain the optic neuritis--inflammation of the optic nerve, that effects many of us with NS. It's a coming Ish--honest it is. LMAO! So is Christmas! Love isha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Dylan was seen by an ophthalmologist in the hospital at age 2 weeks, seeing the colobomas was important in knowing he had CHARGE. As far as doing anything - that came later. With Dylan¹s eyes, patching and surgery were never options. It was mostly just wait and see what he can see. He did wear glasses the first year of life, but not since. For us I wish we had known more on how to help him understand what he was seeing, rather than focusing only on providing visual stimulation. We were so grateful for any sign that he could see something that we had no idea that his brain wasn¹t always making sense of what he saw. This was important in his ability to learn sign language etc. Kim Mom to Dylan 7 CHaRGE, Kayla 12, Tyler 15, wife to Roy > Meloni and Jodi, Thank you so much for the eye info. Whitney is 5 weeks old > and still in the NICU working on feedings. The eye Dr. in the hospital said > that she wouldn't start eye exams until 3 months old. I would like to know > much sooner about her vision issues. How old where your CHARGEr kids when > they > were seen by an ophthalmologist? Thanks, Whitney's MOM > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 My son Brock, now 9 mths old spent 3 mths in NICU and was seen by the opthalmologist before discharge--he was having discharge of his left eye--well needless to say he had a closed punctum and also coloboma of both eyes. What upsets us is nobody ever mentioned CHARGE to us. Was anyone aware of CHARGE while their baby was in the hospital? Brock's vision so far seems very good, he follows things well and sees side vision--but of course doesn't like the sunlight.Also my sister-in-law is pregnant has anyone heard of other CHARGE's in the family (besides siblings)? Thanks Melany mom to Brock > > > Meloni and Jodi, Thank you so much for the eye info. Whitney is 5 weeks old > > and still in the NICU working on feedings. The eye Dr. in the hospital said > > that she wouldn't start eye exams until 3 months old. I would like to know > > much sooner about her vision issues. How old where your CHARGEr kids when > > they > > were seen by an ophthalmologist? Thanks, Whitney's MOM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Getting an early diagnosis unfortunately is still very dependent on your medical team having prior experience with CHARGE. It is not yet common knowledge. I think those with choanal atresia are picked up faster, and that is the one major CHARGE feature that Dylan does not have. Dylan went home at 4 days although he was having trouble swallowing. We knew about the funny ears, a small eye and the small penis. He was readmitted at 2 weeks, because we knew he was aspirating and had discovered a heart defect. The following week he had a major diagnostic workup. Because of the floppy airway they had called in a pulmonologist; by coincidence he had just read an article about eating troubles and other cranial nerve difficulties in CHARGE, and felt Dylan was suspicious of the syndrome. Because of that they called in the eye doctor who found the colobomas and did a kidney scan and discovered he was missing a kidney. Genetics was called in and presto we had a diagnosis of CHARGE at 3 weeks. Although everyone knew he likely had a syndrome, it was the timing of the pulmonologist reading the cranial nerve article that led to early diagnosis for us. Kim Mom to Dylan 7 CHaRGE, Kayla 12, Tyler 15 > My son Brock, now 9 mths old spent 3 mths in NICU and was seen by > the opthalmologist before discharge--he was having discharge of his > left eye--well needless to say he had a closed punctum and also > coloboma of both eyes. What upsets us is nobody ever mentioned > CHARGE to us. Was anyone aware of CHARGE while their baby was in the > hospital? Brock's vision so far seems very good, he follows things > well and sees side vision--but of course doesn't like the > sunlight.Also my sister-in-law is pregnant has anyone heard of other > CHARGE's in the family (besides siblings)? > Thanks Melany mom to Brock > > > > >> > >>> > > Meloni and Jodi, Thank you so much for the eye info. Whitney is > 5 weeks old >>> > > and still in the NICU working on feedings. The eye Dr. in the > hospital said >>> > > that she wouldn't start eye exams until 3 months old. I would > like to know >>> > > much sooner about her vision issues. How old where your CHARGEr > kids when >>> > > they >>> > > were seen by an ophthalmologist? Thanks, Whitney's MOM >>> > > >>> > > >>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 I think we were lucky. Our local rural pediatrician gave us 3 possibilities at birth before Aubrie was sent to Children's Hospital -- Di, Vader, and CHARGE. Very soon it was evident that the first 2 could be ruled out so she was " probable CHARGE " from the beginning. Then we saw Meg and changed it to " CHARGE " . Michele W Aubrie's mom (5 yrs) Re: eyes My son Brock, now 9 mths old spent 3 mths in NICU and was seen by the opthalmologist before discharge--he was having discharge of his left eye--well needless to say he had a closed punctum and also coloboma of both eyes. What upsets us is nobody ever mentioned CHARGE to us. Was anyone aware of CHARGE while their baby was in the hospital? Brock's vision so far seems very good, he follows things well and sees side vision--but of course doesn't like the sunlight.Also my sister-in-law is pregnant has anyone heard of other CHARGE's in the family (besides siblings)? Thanks Melany mom to Brock Quote Link to comment Share on other sites More sharing options...
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