Iritis?

[Bossywife]

I apologize for all the posting, I feel strongly that something is going on with my husband and we have only had one appointment with a specialist (In June of last year) and just aren't getting any advice from anyone except here.

My husband has RAEB 1 and recently has had some strange things going on with his bloodwork as I've said before in posts. Then a week ago his eyes went bloodshot red. Like the whites of his eyes are completely red, this is day 8 with no change.

He went to his family doctor who gave him allergy drops. This man is 59 years old and has worked in lumber mills, we've had horses, dogs, cats, you name it. This allergy diagnosis is ridiculous. Then 2 days later, it didn't get better, so she called in an antibiotic. I'm not a Doctor, but it doesn't take a rocket scientist to recognize an infection in an eye. He has no itchiness or discharge.

I feel completely adrift and at the mercy of family and ER doctors who know nothing about this disease. I feel like he is driving around on bald tires and no one wants to do anything until he has a blowout, and either almost dies, or dies.

I'm wondering if anyone else had this issue, and if I could get advice on how to speak to the MDS specialist when we see him so that i'm heard.

We have never been "noisy wheel" type of people. EVER. But this is so important. I don't want to piss the doctor off, or come off as being a know-it-all Google doctor, but I live with this man every single day, I recognize subtle changes in him, I know things he doesn't even know, like how he sweats at night, and how pale he is.

He just tells everyone (including doctors) he feels fine. And complains to me that he's exhausted.

[Annettec]

My mother had the same thing a few months ago. She has MDS high risk and has been on Vidaza for 21 months. Her eye became bloodshot overnight and stayed that way for a few days and then disappeared gradually. We never did find out what caused it but we figured it was yet again, related to her condition.

And I so understand how you feel.... I also try not to nag doctors but it's so very difficult to stand on the sidelines.... To me, knowledge is power, especially since my mother prefers to live in the moment and leave me to advocate on her behalf.

Your husband is lucky to have you in his corner!
Take care and God bless,
Annette