sorry about another post, but this is the important time, will this work?
I woke up with that washed out feeling, it dissapeared, although I feel a bit weaker than usual, I feel ok.
As I sat in my bathroom, please, understand the importance of this to me, its not meant to be gross, as I sat, I usually look across the small bathroom and my eyes focus no more than the height of the hamper. I have a seashell wallpaper border(so 1980s) running around the bathroom, halfway up the wall, and I always noticed since MG, focusing on it was a sure way to tire my eyes quickly, but this morning, 18 hours or so after last treatment, my eyes had no problems and I noticed I was sitting there staring at the border.
I do not want any false hope, but its all these little things I notice.
When I shaved a while ago, I noticed my eyes were for sure, not straining as much as usual, shaving became a big problem since my eyes stopped moving easily. Again, Im not getting my hopes up, maybe 2 nights of sleep have helped. My back hurts a bit, and IM not going to do anything today or tomorrow, but one tiny spark of excitement ran through my system today, I wanted to share it.
again, Im sorry if Im taking too much bandwidth up, Its not my intention to clog up the site, I just want to share each tiny bit of this IVIG treatment, as I was petrified to go through with it.

Yeppers, it IS working!!!

Allen,

I really appreciated your posts during your hospital stay - and your real life humor!! You may have needed the laptop to stay sane - - but we were the beneficiaries.
Thanks!!

Best of all was this most recent post -- fingers crossed....the IVIG is really making a noticeable difference.

May all things continue to improve for you!

Sue

24 hours and 1 minute since ivig ended, and as of now, I have not needed any mestinon today. I am a pessimist, and although I agreed to all of this, Im going to have to be very convinced I benefited from it.
Its very exciting at this point to think I can get my old way of life back and only have to sacrifice a day or two each 6 or 8 weeks, even every 5 weeks, its well worth it.
No headaches, no eye strain, and its been almost a year since I can say this.
This week in the hospital my eyes were killing me, or at least not working well.
I did not attempt much tv since the tv was up high.


I feel great, I cant even attempt to express my joy at this second, but I am a pessimist, so Ill see how I feel in 6 or 8 hours from now. Or tomorrow.
If I dont take any mestinon for a few days, or longer, my neuro is going to get a big wet sloppy kiss whether he wants it or not.

I apologize for my mispelled words, poor grammer, etc....wow....really... when you reread stuff you posted a few days ago....locked up and hooked up, not that Im too good at this computer stuff anyway.Lets go Jets!


oh, for those in the NY metro area. I strongly suggest using the hospital I went to. North Shore Manhassat. Most of the nursing staff is very familiar with the IVIG on the Neuro floor, very understanding, and the PCAs, dont make you feel uncomfortable regardless of how embarrassing it might be to you.(I did not need any help, but I saw the way they handled my roomate with dignity)

Parking sucks, theres not parking in the area within walking distance, only the lot, and that is usually crowded, just to let relatives know who are visiting.And valet anounces they are closing at 8:30 or so, so it must be a mad rush and long wait for valet parking.(and its Manhassat, so Im sure its expensive)Food prices downstairs are reasonable I was told. Staff is very polite and helpful

Allen,
Since you suffer with eye problems too just like me (first diagnosed with ocular), have you noticed problems with fluorescent lights? I am extremely sensitive to them and they are all over the place -- doctor's offices, stores, hospital rooms. Sometimes when I walk into a store and the fluorescent fixtures hang low, I'm only good for about 10-15 minutes before I have to get out of there.

Those fluorescent lights bother me a lot...I can feel my eyesight and my energy fading, especially if the lights hang low. I avoid them as much as possible.

flourescent lights.

I have a workshop in my garage.
2 weeks before I had my first visual episode, completely blurred and double vision, I was working in my garage and looked up to put a screw into something.
The flourescents were directly overhead and I felt a weird stinging and then seemed to lose my vision for 20 seconds or so in my left eye.100% blurred, could not see anything out of it. I stopped and mentioned it to my wife, who said to tell my eye doctor. I saw him a couple of weeks later ofcourse, and mentioned that maybe I looked directly into the light and it damaged my eyes causing my problem.

The hospital has a 3 bulb 4 foot flourescent fixture over each bed.
The button on the bed allows you to illuminate one bulb, two bulbs, or three bulbs for reading. I explained to the nurse that the overhead light was torture for me to try to read while sitting up with the flourescents overhead.
She asked me why, what do I feel, I guess they all just want to really understand the ocular stuff, but all I could tell her was I dont know, it just hurts me and stings my eyes.
Regardless what Im told tomorrow, I will be going back to some light work in the garage, so Ill see how the lights bother me or not.
Its 6:20 pm, I have not taken a piece of mestinon today. Im a bit happy still.

"my neuro is going to get a big wet sloppy kiss whether he wants it or not."

ROFL!!!!!

IM not an expert nor a long time sufferer of mg, but I have not taken any mestinon today, last 15 mg was 8 pm last night, and I watched football all day, usually an exhausting activity for my eyes, so Im guessing this treatment is somewhat successful so far.
I feel a tiny strain, but no headache as usual, and I have not had a mestinon free day since April 22nd, 2009.