my experience with IVIG, update
 

I'm just checking in, for the sake of sharing experiences. Last night I became fully convinced that the IVIG treatment really is helping me. I finished five days of infusions a week and a half ago, and I've been getting slowly but steadily stronger since then. Yesterday I went to Mass in the morning and my ASL class at night, and was able to walk normally afterwards. That's unheard of for me, after two exhausting activities in the same day. Usually, when class ends at 8:30 I need a lot of help getting to the car.

I am really, really relieved to see convincing improvement with IVIG, since I just started Imuran. It's more evidence that I actually do have an autoimmune disease (seronegative in three tests)! I am not noticing any side effects from the Imuran, by the way.

One more thing: I have woken up with a headache every day since starting IVIG two weeks ago. It's getting gradually better, and now it goes away after my morning coffee.

Abby

That is wonderful news Abby....so happy to hear it!!

What great news! I was so hoping for you that the IVIG would have a 'delayed' positive impact!!

Oh Abby I'm so happy for you. Wish I had gotten the same results from my IVIG.
As for Imuran it has taken my appetite away and I'm losing about a pound a month. When I do feel a little like eating I use max calories such as cream instead of milk, butter instead of spread ect.
Hope it sticks with you.
Mike

Thanks, Mike. I was really hoping yours would kick in soon, too. Could it be that it still has time?

I think Imuran makes me less hungry as well. If you're looking for the maximum calories per bulk and nutritional value, can I recommend nuts? They're really high in calories, but also in protein and vitamins, and they have a good balance of protein and carbs (for keeping your blood sugar even).

Abby

I have an Appt the end of month I'll see what the next step will be.
As for the nuts my wife is afraid it will bring on another attack of diverticulitis which put me in hosp for 5 days when I took prednisone. Our hosp is really bad. They had no clue what MG was and couldn't get my meds so I had to get meds from home. It was a 5 day nightmare.
Mike

Try nut butters. ;)

Great idea thanks

Protein drinks
 

Some in the diet section (including the ones with "Advantage' as a middle name and some in the veggie or health section, labeled a chai drink with lots and lots of protein. The first type has actual cream in it, so I have to take care. The second one has no disadvantages for me. Easier to sneak into a hopital room than a hamburger tho--and no pesky pieces to get stuck in the digestive tract.
Harriet

ps--I can get my eyes open again and I walked a little and did errands today and I have a PT appt (they said Medicare like folks looking for better mobility).

At almost three weeks after the end of my IVIG, I feel really good. I'm walking normally most of the time, unless I'm really, really tired. My arm strength is better. I've been doing some really heavy housecleaning (attacking closets I was trying to forget about--organizing the attic--I mean the real stuff!) and I'm still standing.

I had two weeks of headaches, but not severe.

All in all, I have to say the IVIG was a big success for me, even though it was so slow to kick in. It was a week and a half past the last infusion before I was convinced it was helping. It's awfully nice to have a break, though I am not expecting it to last for too long. Hoping to get the house in order before I get weak again!

Abby