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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-15-2009, 09:06 AM | #1 | |||
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So I woke up today, and it took about 5 minutes for me to open my right eye, completly. I have never had that happen. And my I can tell today is going to
be a bad one, just because of that, and I can hardly hold my head up, I'm so fatigued. I also when getting up out of the chair for breakfast, was very lightheaded and my vision went blurry and felt like I was going to pass out. Why is this happening when I'm on the prednisone? Shouldn't it be helping? Last night I almost choked on an apple, which I thought was also weird since I've had 6 plasmapheresis sessions in the last month... Please help with any advice |
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12-15-2009, 10:18 AM | #2 | ||
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Grand Magnate
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Call your doctor!
I don't like what you're saying - being so lightheaded is not normal. Please get someone to see you. Did they ever do a cardiac workup? Pred should be helping. Are you on Mestinon? The balance of drugs with MG is more like an art than a science. Too much can make you feel worse. But my gut instinct is that something else is going on with you. Especially given that one reaction you had to plasma. Sometimes MG is like this. You can go through bad episodes. Did you go on that trip? Maybe that made it worse. When I was on steroids, my pulse dropped very low. Can you check your pulse? Steroids act differently on everyone and can have weird side effects. It's always good to have a doctor check on you after you start a drug too. I hope you will get to feeling better soon. Annie Last edited by AnnieB3; 12-15-2009 at 10:49 AM. |
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12-15-2009, 12:11 PM | #3 | |||
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LISTEN to Annie!!! Here is a link to an article from a leading MG specialist -- scroll down to page 10 -- read the LARGE PRINT!!! (regarding the need for close observation when giving steroids to MGers with breathing and swallowing difficulties)
http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf I am also bulbar. I have run a copy of this -- and have it IN my purse -- to EDUCATE doctors, nurses, etc. who don't know any better. Study this document carefully -- it could save your life!
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~jana |
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12-15-2009, 03:13 PM | #4 | |||
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I agree with Annie and Jana that prednisone can be dangerous for people with bulbar symptoms....A lot of the times, they'll admit patients to the hospital when starting them on high dose prednisone to make sure they can take care of things if there's an exascerbation, or they'll start them on a low dose and slowly increase it in an outpatient setting...I was admitted to the hospital when they started me at 60mgs...
Another thing that could be causing your dizziness is anemia...I found out that plasmapheresis (or maybe at least having it as often as I was having it) caused me to have aplastic anemia...I found this out because my hemoglobin was at 85 a couple of months ago...This was after having plasma exchanges practically every month for 6-months...Suddenly, my hemoglobin went back to 124 one month later....My neurologist said that my bone marrow must have been suppressed as there is no way that hemoglobin can go up that high in that short a period of time, even with iron supplements.... And then there's the prednisone itself...It causes dizziness...i was having horrid panic attacks and vertigo when I first started taking it for a couple of months....There's also the possibility of blood sugar being too high...I was also having blurry vision and feelings like I was in a vacuum or something...It was terrifying...I still get feelings like that now and then, but I sorta got used to it...Bottom line, though, is that it's a good idea to see the doc., Tyson....Good luck to you and let us know how you're feeling... P.S. What dose of prednisone are you taking? Nicky |
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12-15-2009, 11:41 PM | #5 | |||
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Quote:
But, that information is very helpful, i will definitly make my doctor aware of the anemia thing when I see her tomorrow. Im just going to ask her to do a total workup, or as much as she can with the blood she draws tomorrow to cross out anything else on the list. Im sorry you had those sideaffects, prednisone really does suck. Im getting puffy and out of shape, and at 17 i hate that! Its so frustrating not to be able to go out with my friends. I just want to be cured. Im going med school to find a cure for this disease for all of us! Thanks for your concern. I hope your feeling well. |
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"Thanks for this!" says: | Nicknerd (12-15-2009) |
12-16-2009, 09:09 AM | #6 | |||
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Tyson,
I hope you get some answers soon. I know this is a frustrating disease. I noticed you said you still have a droopy eyelid even while taking Pred. I too still deal with that and have been on Pred for about 2 months now. That is where my Mestinon comes in. If I take it when my eye starts drooping it usually helps for 4 hours or so. Neither Mestinon or Pred alone help but the combo seems to help temporarily. I can tell you though that after about 5 or 6 weeks of Pred I feel more like my old self than I have in a year. Give it some time to kick in and I think you'll be amazed at the results. I also have my energy back and have been able to walk again so try not to stress about feeling flabby. There are some scary side effects to the Pred in the short and long term but I would take the way I feel now with the Pred over the way I felt without any day!!! Hang in there and try not to overdo it on your trip. I know it is sooo hard. My biggest problem is knowing when to say I've done enough. The better I feel the more I fight that but I have realized I pay for it later if I don't force myself to take a break now and then. Kendra Quote:
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12-15-2009, 11:26 PM | #7 | |||
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I am getting tested for anti phospholipid sydrome tomorrow i believe, so maybe that will bring new answers out...like i said its not all the time that i feel like that, but once or twice i day, i get really dizzy and feel ike im going down.. They did the blood pressure when standing and sitting, etc, and an EKG. but nothing else cardio related. I still have a pretty droopy eyelid with the pred, which is weird. I havent gone on my trip yet, I go thursday, and hope it goes well. Im bringing a print out of everything i that i need in case i go into crisis while there, for in Maine, there isnt much for MG help. Thanks for your help! Hope your feeling well |
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"Thanks for this!" says: | AnnieB3 (12-16-2009) |
12-17-2009, 06:45 PM | #8 | |||
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I havent gone on my trip yet, I go thursday, and hope it goes well. Im bringing a print out of everything i that i need in case i go into crisis while there, for in Maine, there isnt much for MG help.
/QUOTE] I know what you mean about the medical care in the small hospitals along the Maine coast (if that's where you are going) I took a RV trip with my sister and her husband about a year after dx and ended up having to visit 3 hospitals along the coast with bronchitis/pneumonia and resultant mg problems. They were very nice and really tried, but after the first one, I had them call my neuro back in TN before I allowed any treatment. At least they admitted they didn't understand the issues and were willing to call my doc. Good luck and have a great time! Maine is beautiful and I loved the trip even with the hospital problems. (Of course, I was born and raised there so I might be a little biased!) |
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