scidude's Posts | DailyStrength

Status: Feeling okay. Some eye muscle control issues that can become really distracting and frustrating when they get bad in the afternoon.

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how fast might thymectomy results show?

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Had a thymectomy a year ago and still have significant eye weakness, although not much general muscle weakness. Not sure if it was the thymectomy that helped!How long might it take for a thymectomy to show results, if any?Could I still see results...
Big PREDNISONE question

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I've been really trying to reduce my prednisone dose, and was down to 2.5 mg per day, but then my eye symptoms (and when tired, a "weird" weak feeling in my face) came back. I'm now increasing my dose up to 7.5 mg per day hoping that my irritating...
HELP: Symptoms reappearing!!!

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Hi everyone. Been awhile. I had a thymectomy in July and things have been steadily improving. Haven't had significant double-vision for some months, and my eye was only slightly symptomatic, well controlled by mestonin (60 mg in a.m., 180 late...
Symptoms worse after surgery???

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I had my thymectomy about a month ago and it seems that my left eye issues have gotten a bit worse. Did anyone see a slight increase in their symptoms after surgery? If so, did they eventually improve?
DID YOU SEE RESULTS FROM THYMECTOMY?

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Well, I've been campaigning for a thymectomy for over a year, and we even had a failed attempt to complete one in January. It failed because no one realized that YOU SHOULDN'T TAKE A MESTONIN BEFORE THE SURGERY. And I took a big dose.low O2 levels...
How much Cellcept are you taking???

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I'm supposed to be taking 1500 mg per day, but that dose is a bit frightening. I wind up taking between 750 and 1500 mg, depending on whether I take a night dose. I KNOW I'm supposed to stick to the assigned dose, but is anyone else on this high...
IVIG monthly????

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Does anyone here do a regular IVIG treatment, perhaps monthly? I've heard that some people--rather than waiting for 2 to 4 months for symptoms to get worse and have 4 or 5 days of IVIG--get a one day per month "preventative" or maintenence...
Did anyone have problems w/ thymectomy?

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Did anyone have difficulty during their thoroscopic thymectomy with their oxygen levels dropping when they deflated a lung?They deflated one lung and then my oxygen levels became too low. I had taken a large dose of mestinone before the surgery and...
HELP: Effects of Mestonin on Thymectomy surgery?

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A week and a half ago, my thoracic surgeon attempted a thorscopic (video assisted) thymectomy. When they deflated my lung, my oxygen levels dropped. After repeatedly trying, he gave up.We had not discussed completing the surgery transsternally...
SAVED ME: my incredible neurologist in L.A area.

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I was ready to give up. Then I wound up dragging myself into the ER a month ago or so and they just wanted to up my cellcept and mestonin. NO WAY that was going to do it. I had an appointment scheduled for a 2nd opinion at Kaiser Woodland Hills...
Your experiences with benadryl for sleep?

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I'm getting 4 or 5 hrs of sleep nightly. I'm looking for suggestions. What are your experiences with benadryl or other meds. (I've read a few past posts, but looking for more)I found out (from this group) that melatonin is contraindicated.Anyone...
Now on prednisone after IVIG and getting worse

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Has anyone experienced similar problems? I felt better after IVIG (only a bit) and have since begun 10mg prednisone. Now I barely can raise my hands up to wash my hair in the morning, and shaving and toothbrushing is a two-handed affair--with many...
Sleeping problems--is melatonin okay?

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I wanted to know if anybody has tried melatonin for difficulty getting to sleep. My neuro says okay, but I saw an article stating that it can interfere with calcium metabolism. Any others with experience?
Looking for MG experienced neuro in CA

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Has anyone had luck in the southern California area (or for that matter, anywhere in CA) with their neurologist. I'm really interested in pursuing a thymectomy, if only because of the considerable reduction in symptoms found by so many. Many...
IVIG: How long for effects to show?

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Just completed 5 days of IVIG drip, 4 hours per day plus set-up time. How long does this stuff take to show effects? Days, weeks?I feel a bit stronger 3 days later, but how long might I still see some improvements, if any?: