New symptom
 

I have a new symptom and was wondering if anyone else has experienced this. At one time I had double vision however that is now gone but I still have a slightly drooping right eye lid. My new symptom is both eyelids start to quiver and then almost completely close. My wife says that my eyes get real blood shot and start drifting. This phenomenon only last about 3 to 5 seconds and then goes away. It appears to be increasing in frequency. My wife has now revoked my driving privilege. It started happening three times a day but yesterday it happened 10 times and it’s happened five today already and it’s not even noon.
Has anyone experienced this?
Mike

Oh, I'm so sorry to hear this. I know how much it meant to you to be able to drive again when you got the double vision under control. I hope that this is passing. Since you and I started similar treatments at around the same time, I think of you as my MG buddy, so I follow your story with special interest. Hang in there! About a year ago I had one evening of double vision and I thought, "This is it, there go my eyes--life as I knew it is over." But it went away. You never know what's going to happen. You're having an intensive IVIg session real soon, right?

Abby

I had my second IVIG yesterday in a series of 8 this time. Next one is Monday. That little infection I had really set me back as far as strength goes. We really need to avoid the general public as best we can. Hoping these IVIG treatments kick in soon.
Mike

Mike, If I were you, I'd go to the hospital to get checked out. It might not be a warning sign of a stroke or TIA but it might be. Have you ever been checked out for any clotting problems?

Please, let the doctors have a look. I hope you'll be okay.

:hug:
Annie

Yes I go to heart center once a year for checkup because I have a small AAA plus my GP is a heart specialist.
Mike

Well, Mike, once a year won't help you right this minute. Your health can change and it's right now that you're having symptoms. Anything new like that, especially something causing bloodshot eyes and partially one-sided, needs looking at.

Mike, I agree with Annie. COULD be the MG --- but, could be something else. Ya just never know! You need to SEE someone -- NOW!!

Also, I've heard of IVIG "suddenly" starting to "disagree" with your body. This is what happens with allergies. People are around something for YEARS -- then, one day they just develop an allergy to it. So, your body may be SCREAMING that it just doesn't like the IVIG anymore. I sure HOPE and PRAY that this isn't the case -- but, you DO need to get this checked OUT!!

Have you changed IVIG brands or anything? There might be something wrong with this brand OR this particular batch. When I had my one infusion, they were VERY particular about me letting them know about ANY unusual side-effects -- any NEW symptoms. THIS certainly qualifies!!!

:hug:

Ok going to give this some serious thought.
Mike

I'd like to add my voice here. Yes, any new symptom should be evaluated immediately. I'll try to remember that myself.

Abby

That's funny Abby, I feel like you are my MG buddy also.
After giving this some thought, I believe this is muscle related. This started occurring before my IVIG treatments and I have discovered that rubbing my eyes will cause the symptoms to appear. So I'm going to give it a wait and see attitude. The only thing we can think of that may have caused this is we increased my steroids about two weeks ago.
Mike

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! :D)

:hug:

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.
Mike

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! :hug:

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.

Annie

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.
Mike

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.

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.

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.

Mine is a little different. They are bloodshot for about 3-5 seconds then clear right up.
Mike