Hello all! Just thought I'd post some GOOD news for once.

Finished my IV IG and was able to get all of my housework DONE this weekend! Plus, I was able to work today! It felt amazing! I hated being @ home all the time - it was just depressing~

My pastor and his wife came by this weekend - it was great!

I just KNOW that 09 is going to be a great year! For ALL of us!

Kathy also posted an amazing post - if you have time, please read it! It is so inspirational. It shows just how far you can get in one year!

Last year @ this time, I truly thought I was crazy. Too weak to do anything. Anything! And now I am able to get my work done, take care of my fellas (most days) and feel human!

I know that MG is scary, but with a support system like ours it is tolerable.....THank all of you for being so kind! I really appreciate it!

Erin

Hi Erin
how lovely to hear such great news for you your certainly making the most of your new strength and buzzing
take care Alan

woohooo for buzzes and energy, that is how I get when taking oral Prednisone for my symptoms when they get really bad, I am undx..

just wanted to say glad you getting some energy and somethings done..hugss,sarah

Glad to hear you are feeling so good Erin!!!

HEllo there! How are YOU? Are you getting stronger now? How is your breathing? Your walking?Swallowing?

Tell me all about how cold and BEAUTIFUL it is there - I would give almost anything to be snowed in here - with a generator and lots of fire wood!

It has really been a great day! I've gotten so much done that I'm gonna talk to Dr. I about getting it regularly..........don;t know how far I'll get, but he does have some patients that get it once a month, so we'll see.......


What has been going on with you?

Erin
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I just love the feeling! I know that some people have a hard time with it, but I get 5 400 ml bottles and they can crank that baby up to 360 ml an hour - I've never had a reaction.......it just feels so good! The plasma exchange is the one that really gets me - too gross for words!

I am @ 60 mgs right now of pred, but have been able to taper down my mestinon to 2-3 pills a day ( I was up to 7-8 before) and the GOOD effects of the pred are kicking in - love the energy! Not manic - just being alb eot get off the sofa and get some work done.......

Going to see my onc tomorrow for more blood work - finally getting over the whole blood/needle issue! Thought that day would NEVER come!

What a great day!!!!

How do you handle getting around? Do you have much strength?

Erin

Redtail - are you OK? How is your strength? How are you handling the heat? I worry about you............


You are always in my thoughts and prayers! Always!

Erin

Thanks Erin,

I'm doing ok, I went for 5 walks last week, quite a big thing. I get up at 7am, then head out around 7.45, I wait for the Mestinon to kick in, and walk for about 30 minutes.

Im hoping I'll get a bit fit, and lose some of the weight I've put on. I'm hoping I can keep this up, even If I have to drop it back to just a few times a week.

Today is the first hot day, its probably getting over 31C, tomorrow and Thursday are going to be up around 40C(104F) so I will be hibernating in my cool little house, with lots of fruit juice icy poles to keep me cool.

Its good to hear you are getting over your needle issue. I had a blood test last week, and the lady said they were having problems with the tubes not creating suction. We blew one vein, and then went into the other, and ow it hurt. I will be happy when one day I can stop having blood tests every month!!!

How are you doing, still good??

I'm pretty interested in getting this someday..I've given it a LOT of times, and the reactions, albeit infrequent, are no fun at all.

Very glad to see it's helping you out! Everyone I've ever given it to loves it, only 1-2 kids got sick with it..aside from the reactions. Otherwise it's AWESOME!

I had several patients that would get it monthly when I worked at the hospital. However, none of them had MG. Hopefully you get something worked out with your neuro so you can get it more frequently.

Hello again! What were the reactions? Other than being thirsty, I feel AWESOME! The plasma exchange is what I cannot stand-----too invasive and grosss and I feel tired for a while..........


I see my neuro in the 24th - gonna ask him for monthly maintenance - hope it goes well.....still waiting for my central line......he is fighting me on that one

Erin