[Stellatum]

Hi, everyone. I've had a bad few days, and my doctor finally called me back. When I described my symptoms, he sent me in. I'm hoping for IVIG. I've had a nice rest these four hours (haven't seen the doctor yet), so of course all my symptoms are subsiding...but since my neurologist sent me in, I hope that won't matter.

Abby

[Annie59]

Abby, Oh yes isnt that something that you rest in a chair in a bed and get some better and you then can get responses like why are you here. I hope they do give you what you need. Sending a hug Abby. You deserve open-minded caring docs this time.

Annie59

[suev]

Hope all goes well, Abby. Update us when you can!! Fingers crossed for IVIG for you.

[Stellatum]

Thanks, guys. They admitted me, and I'm starting IVIG this morning. So things are going well.

Abby

[pingpongman]

That's great Abby. Here's hoping the IVIG helps you through this tough time.
Mike

Originally Posted by Stellatum

Thanks, guys. They admitted me, and I'm starting IVIG this morning. So things are going well.

Abby

[Stellatum]

Well, I had my first infusion yesterday. I'll have another today and one more tomorrow, and then they'll decide whether I need more. I woke up this morning feeling a bit stronger, but nothing that couldn't be accounted for by getting some sleep.

I was hoping for something dramatic, but I'll settle for a gradual improvement...Mike, I'm in the same position as you right now. Let's keep comparing notes. I'm worried that I won't really be able to tell if the IVIG helped or not, because I typically go up and down anyway. I am in a very weak phase right now. If I get better, how do I know if it's just my normal pattern, or if the IVIG helped?

Since I'm still not 100% convinced my problem is auto-immune, I really would love to see a dramatic response from the IVIG! Ah well.

It's awfully nice to have an internet connection in the hospital!

Abby

[alice md]

Originally Posted by Stellatum

I'm worried that I won't really be able to tell if the IVIG helped or not, because I typically go up and down anyway. I am in a very weak phase right now. If I get better, how do I know if it's just my normal pattern, or if the IVIG helped?

Since I'm still not 100% convinced my problem is auto-immune.

Hi,

Patience is the word with this illness.

It takes time to know if something is helping or making your worse or not doing much at all.

In fact, I have learned with time that slow and gradual improvements are much better and more stable then dramatic responses.

In took me more then 3 months to understand that my gut feeling that steroids are making me much worse is correct (and not what my neurologist at that time said).

I had a dramatic improvement every time I had plasmapheresis, that was clear and obvious even with all the fluctuations, but also a very dramatic crash within a week!

It took me six months to be sure that the significant (but not dramatic improvement) I had with Albuterol was real. It only led to about 20% improvement in my condition, but it was fairly stable and predictable (unlike any other treatment I received till then, including mestinon).

My current neurologist (who shares my opinion that in this illness slow and steady is the way to go) suggested I also add ephedrine. This led to another 5% improvement. again not dramatic but real.

So, bottom line if IVIG is not causing you any significant side-effects, just let it do what it does. don't expect to know right away. it may take a few months before you are sure if it's doing something, or it is just the ups and down of this illness, combined with some bed-rest in the hospital.

I think your concerns that this may not be autoimmune are justified, but I would not peruse them at this point, if I were you. From my experience, it really annoys neurologists when you raise such concerns (don't ask me why).

Hope some of this helps and that you feel better soon, and don't have to stay too long in the hospital.

alice

[Stellatum]

Thanks so much, Alice.

My neurologist is telling me that the fact that I'm not dramatically better after two infusions means very little, and that I should give it a couple of weeks.

I will try to be a patient patient.

Abby

[craftyRCC]

Abby,

I hope you're starting to feel a bit better, remember give it time....
Sending good thoughts your way!

Rachel

[Tracy9]

My thoughts and prayers are with you! I've been on IVIG for six months and have noticed improvement in vision and choking. I'm wishing there were more improvements. I hope there is a chance there could still be more improvements in other areas.