In the Hospital
 

Hi All, Went for my first Neuro appointment today and they admitted me to the hospital to begin the IVIG for 5 days. Scared to Death. I do not know what to expect.
:(

Lisa, Please don't be worried. The fact that your neurologist was proactive and knew you needed some help is a good thing. Ask them about taking Benadryl and Tylenol before the procedure and continuing to do so. Make sure you drink plenty of fluids. Let the nurse/doctor know of any adverse effects of the IVIG. Many people do just fine on it!!!

It's fairly normal to do the first IVIG in the hospital. Later, if your insurance allows for it, it can be done at home or an infusion center.

You're in the best place for care. Stress won't do you any good, so if you can meditate or find a calm place, do that. I really hope things go well for you. Hang in there!

:hug:
Annie

From us.....:grouphug:...:grouphug:....:grouphug:...... .hope this helps a little......:)

Good luck!!!! I second that drinking LOTS of water!! Also, for me rate is really important.. if you start getting a headache slowing the rate can really help!! That and toradol worked wonders for me too!

I am curious what is so different about lisainvegas's situation that her first appointment with neuro she is admitted for ivig and seems most of us, myself included, have been to multiple visits to multiple neuro(s) over several months and only relief offered has been starting mestinon and prednisone (not that i begrudge her or am not appreciative for the rx.

There is no "standard of care" in MG.

Therefore each neurologist can do as he/she pleases.

Ideally this should also take into account the life style and preferences of the patient and not be significantly influenced by other reasons.

But, I agree with you that many times management decisions seem to be completely arbitrary.

As opposed to my field of practice in which a newly diagnosed patient would pretty much get the same work-up and treatment anywhere in the world (unless there are very compelling reasons not to do so), this is not so for MG.

Just follow Annie's advice and I'm sure you will do fine.

Were you comfortable with Dr. Farbman?

scrubbs

Good luck with everything. There's really nothing to it--you'll get an infusion for a few hours, possibly get really sleepy and need a nap, and hopefully wake up feeling better. If you get a headache from it, ask for them to infuse more slowly on the next treatment.

Good luck with your treatment. :hug:

Hi Scrubbs.
 

I met with Dr. Farbman and he was great, but he said that he was going to refer me to Dr. Ginsuerg. I am currently in the Hospital and Ginsburg is coming to see me tomorrow. I just wanted to say thank you so much for the information you gave me.

Lisa

Lisa, Did you have the IVIG? Did it go okay?

Tony, I honestly shouldn't be giving any advice on IVIG, since I can't have it and never have. Most of what I know is from friends of mine who get it, from reading and from you guys here.

It sounds like you are getting such great care, Lisa. I hope that reassures you!

Annie

Hi StephC
 

In response to your question, when I went in to meet the Doctor for the first time I was in the beginning stages of a crisis. I had never even heard about this treatment and he said that IVIG was a standard of treatment for someone who has been in a long remission. I have had MG since 1990, had Thymectomy that same year. The Neuro is the one of the physicians for the MDA Clinic here. That is the only thing I can think of.

Lisa

Ivig
 

Hi Annie,

Yes, I have had two days of the infusions and I have improved a little already. My speech is much improved and I feel that my neck and arms are a bit stronger. The only problem I have had is a annoying headache, but I am working on hydrating better before each infusion. I will keep you up to date. thanks for asking. :hug:

Lisa

Lisa;

I have been getting infusions for 3 1/2 yrs. My nurse now, who's company used to have an infusion center in the offices on Dr.s Farbman and Ginsburg had to close when their MS Dr. left the group. Most of her infusions were Tysabri.

I will double check with her but I think she had only 3 MG patients she infused with IG for MG.

2 had the initial 5 and a just a few after. And that was all they needed because of their improvment.

She had one patient that had the 5 and never needed another. I HOPE YOU FALL IN THIS CATEGORY.

scrubbs

I had an absolutely brutal, completely debilitating headache after my second day of the five day infusion. The nurse on the third day (while I was still suffering from the headache) advised me to take some Benadryl, as well as alternating doses of ibuprofen and Tylenol. It helped after several hours...and if I had even an inkling of a headache the following two days, I would start taking the meds again and it kept it in check.