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Old 01-21-2012, 07:24 PM #11
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More "clues" -- started BEFORE most recent IVIG -- and happens AFTER rubbing eyes -- yes, I would now agree it is "probably" not an emergency -- UNLESS other symptoms start to "creep" in!!

Anywho, I'm gonna sound sort of "snarky" -- and I REALLY don't mean to -- but, why don't you just STOP RUBBING YOUR EYES!!!!!! And see if this awful thing stops! It has got to be scaring your poor wife!! (And can't be doing YOU a whole lot of good! )

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Old 01-21-2012, 07:36 PM #12
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Well several other things trigger it but not sure exactly what. For example I am a "type a" so I get real intense and stressed over stupid things. Today I bought my wife a new microwave and I stressed so bad I had to sit for 30 minutes to recover. I just gotta lighten up and have been really trying but at 71 it is hard to change. Not sure I could get through this without my wife. She is actually my doctor. NOTHING goes in my mouth without her consent and no doctor sees me without her being there. I am really blessed.
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Old 01-21-2012, 08:12 PM #13
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Well, Jana, it's not normal to have bloodshot eyes and what if that is the impetus for the rubbing? If it is an allergic response to the IVIG, it may not kick in right afterwards. It may not be an emergency, however, we are not doctors and only they can assess something new like this. I like to play the "devil's advocate" as much as you do but sometimes you just have to trust your instincts and see a doctor.

Mike, You are very lucky to have such a great spouse. Sometimes you might need someone else to talk to. Have you ever thought about seeing a psychologist? Maybe one who is trained in meditation techniques? You don't have to "change" but adapting really helps. I can put myself into a meditative state so quickly after years of doing it. These days I refuse to get stressed out. It's not worth it!

I can't recall, are you on Pred? Has anyone checked your adrenal function or thyroid lately? Sometimes the stress response has a physical cause.

I hope you keep a journal at least, Mike. And if things get worse or you have 1-sided symptoms, please go in. Take care.

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Old 01-21-2012, 08:27 PM #14
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When it occurs my eyes close almost and get real bloodshot and the eyes go cock-eyed but it all last about 3-5 seconds and eyes clear up. This event occurs even without rubbing. I just discovered I can induce it by rubbing. This stuff occured before the first IVIG started.
We boosted my Pred to 60mg about 2 weeks ago. My wife suspects that as maybe the cause. Had bloodwork about week ago (slight increase in white blood cells). My Neuro is pretty through on my blood work.
My wife keeps a DAILY journal on me on her little handheld thingy. (Itouch I think). She takes it to all my Dr visits. Don't know what I would do without her.
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Old 01-21-2012, 08:41 PM #15
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Good, I should've figured your wife is on top of things!

Have they checked your electrolytes? I was wondering about calcium and vitamin D (a separate test). Low calcium can cause twitching. Do you stay away from sodium?

This disease really sucks. It's like a little, bratty kid. You have to keep an eye on it all of the time cause it acts up when you least expect it.
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Old 01-21-2012, 08:56 PM #16
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Yes my GP stays on top of all my other problems. When I lost all that weight on Imuran it cured my diabetes. I am on 60mg of Pred and my fasting blood sugar is 80-90.
I was in almost total remission in middle Nov after getting off Imuran for about 6 weeks then started getting weaker. Then I got a slight infection for a couple of days and it really set me back. That's when my Neuro started my IVIG's again and boosted my Pred. I have concluded the IVIG's last me about 6 weeks from my wife’s journal.
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Old 01-22-2012, 01:05 AM #17
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I had bloodshot eyes for a while, at least 6 months or so. It seemed to be because my eyelids were weak and could neither open all the way nor could they close. There were times when I put a wet washcloth over my eyes because they hurt so much from not being able to close them all the way. I'm so glad I rarely get that trouble now, but your entry reminded me. I remember rubbing my eyes alot when they got itchy from not being closed all the way. I don't remember them getting worse after rubbing them though, so maybe you are experiencing something different.
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Old 01-22-2012, 04:18 AM #18
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Mine is a little different. They are bloodshot for about 3-5 seconds then clear right up.
Mike
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