Joan Marie,
I am in 100% agreement with you on this! I too believe alot of times we are overmedicated and end up in worse shape than we started. I know that is definitely the case with me. I have stopped taking my Agrylin and also the Ambian the Dr gave me to sleep due to the HORRIBLE insomnia I have from the Pred. I am tapering down off my Pred too but that is going way to slow for me but there isn't a choice on that one.
Tyson I just think you are an amazing young man and I admire you so much for working so hard to try and beat this disease. I have 2 sons close to your age and I love them to death but honestly I don't think either of them could cope with this as well as you have. I know you are struggling right now but please know that everyone is here for you and we think the world of you. Your spunk and youth bring a refreshing change to us older ones LOL!
I'm off to the Hematologist for labs and to hope to have more info when I leave as far as how much of my health problems are Agrylin related.
Kendra

Kate- thanks for your support. I do have a sinus infection, again, never really got rid of it while using the horrible clarithromayacin (sp) yet now I have a new antibiotic augementon or something. That supposedely is okay to take with MG. So hopefully that will get rid of it.

I think/hope thats why my days are so bad right now, I want to be able to go skiing, more than anything!

I realize everything takes time, but i hate that about it, its so hard to be able to cope with the time factor, even in normal life circumstances. Yet im doing it..
Thanks again kate. Your a great help. And dont worry about not having answers, its quite fine.

JOAN- i have asked my doctor to taper me off my pred, for its not doing ANYTHING. While I had my crisis a week back, he said he wanted me to stay on it, for now, and in 2 weeks i could start tapering off it. -Though to some degree I am on the same page with you..
Maybe the specialist at Duke will have more answers.

Brennen- I tried mestinon, yet it didnt do a thing for me. I went from the highest dose possible, to the lowest dose and didnt see any improvement, so i was told to stop trying.
Im not sure im on the same page with how fast your saying pred. works. It shouldnt take up to a year, from my studies. It should only take up to a month or 2 at max to show some kind of improvement, and it hasnt yet.
Theres nothing else for me to take, for a day to day basis, its all long term right now, hopefully waiting for the thymectomy to kick in.

Thanks for your concern.

Kendra- Thanks so much for your words, they mean alot. Yet Im not sure, maybe i just seem alot stronger on the website, or maybe i truly am what you guys think i am Strong. I just read your post about the Hemo, yet I havent seen alot of your posts, so im unsure of what agrylin is...But i hope things go well, and that you test neg. Though if you do test positive, im glad your hemo is going to treat it as aggressively as he can. You deserve it.



Hope you all are doing well.

Tyson,
Don't be so impatient, I started Pred mid August 2007, constantly increasing to 75 mg/day (1 mg/kg of weight) and I only saw improvement in my muscular strength begining of January 2008 but sight problems disappeared after 3 or 4 of weeks...(I had generalized MG).
I had two series of IVIG without any effect and 5 PLEX in January, which effect was dubious as I think the improvement at that time was due to Pred.
I used to swim every day but it took me a year to be able to resume that activity.
I'm now in a relapse period and I have PLEX on a weekly basis and this time they work and keeping me afloat, waiting for the Pred(50 mg/d) to kick in.
One last word, Mestinon did not seem to work to work at the begining but Timespan did, as without it, swallowing the first Mestinon tablet of the day was horrible, constantly choking, it was taking me half an hour to go through...
I think you are expecting too much of Mestinon...
Take it easy and let time pass.
Maurice.

Hi Tyson,

I want you to be able to go skiing to, and have a great time!!!!!!!!
I've been skiing once in my life, over in Victoria (australia that is) I was covered in bruises, was cold all the time, but had the best time, I didn't want to leave.
So I'm hoping you can, will go
Kate

Neutro,

After reading your message to Tyson, I noticed we have a lot in common! Mestinon also didn't seem to work for me at first...After adding prednisone, it worked much better, as did PLEX...PLEX used to work well for me for DAYS (in the begining). After taking prednisone for a few months, it worked for up to a month...

Prednisone also didn't kick in for many, many months for me as well...

I've had to taper my pred. because the side-effects were brutal, and i've always felt like it hasn't worked for me...I know that it has, though...My arms and legs are much weaker now, especially my arms...My facial weakness is very bad again too...

I went swimming today, and my legs were like lead...Couldn't do the front-stroke for very long either...Worked out in the gym, and felt good, but extremely heavy....Am hoping that continuous exercise, as much as I can handle, will be good for me in the long-run, but it's a bit discouraging in the short term when you're very outta shape and have MG...

How are you doing lately?

P.S. Have you tried Imuran? I'm on that now, and waiting patiently for it to hurry up and start working!

Nicky

You mentioned time-release...That has been a life-saver for me...It also works much better than regular mestinon for me, and has allowed me to function somewhat normally...Also, taking my mestinon extremely vigilantly