Thanks Mike.. Nope not on Mestion at this time.. I still don't have an official diagnosis and they still have a lot of bloodwork pending - including LEMS and Musk. I hope they let me get more IVIG.. its frustrating that the timing of the Lumbar Puncture and them finding that I did have aseptic meningitis might make them not give me anymore IVIG.. Hopefully the bloodwork that is still pending will have some answers for us. The limbo period is so not fun! I think my generalized muscle weakness including my eye is a little better.. but still dont' feel very great.. My speech is a touch better too.. but at the end of the day it starts slurring a little again.
It's hard for me to squint to see things as my face feels too fatigued to make that motion.. and smiling just tuckers my face out very quickly.. is this normal for MG? ALL of my muscles feel this way, but since I use my face more (i'm usually a smiley person) I really notice it tremble with fatigue after use.. Fun Times!! Thanks again for your time!

Well at least it appears they are making an effort to find your problem. I was very lucky to get my quick DX. Some on this board took years to get a DX. Sometimes you need to find that doctor that thinks "outside the box". Anyway you need to keep plugging away at the doctors because you know your body better than they ever will.
Mike

Thanks Mike.. yea they have done a lot in the past 5 or so months since this has started. I'm not a huge fan of the dr I am assigned to right now, but hopefully we will find some answers! I am ready to at least know what we are up against, and hopefully get back to life more! Thanks again, I really apprciate it!

That's nuts that they wouldn't give you more IVIG. Aseptic meningitis, unfortunately, is a fairly common and not dangerous side effect. I've had it at least four times. The first time was horrible, it was following my first transfusion which they did 5 days in a row and I spent 4 days inpatient wishing for a chainsaw to cut my head off.

The second time I went to the ER and got by on some IV Dilaudid and some pills they sent me home with.

The last couple times, I just laid in bed in fair agony and got by on pain meds. It comes with the territory for some of us. My neuro says, you're just going to get it from time to time. I have not had it or a headache since they lowered my IVIG dose.

Have them slow your infusion rate way down, take Benadryl and Tylenol round the clock for two days afterward, and hydrate before and after for two days. That's your best bet. For a while I got IV hydrocortisone before and after too, then just before, then not at all.

Hi, just wondering how the IVIg treatments cause the meningitis? Is it due to not being sanitary during infusions? Or contaminations?

The "itis" part of meningitis simply means inflammation. "Aseptic" means without sepsis or infection. Aseptic meningitis indicates that the meninges (the covering of the brain and spine) are irritated and inflamed. The proteins in IVIG can cause a reaction, usually if the infusion is given too quickly, or the person is not hydrated enough, and sometimes just "cuz."

Thanks for the reply. Very new to the IVIg and thank for you that!

I can relate. I started my first round of IVIG this Monday and went home feeling fine. Tuesday morning I woke up with a headache, nothing severe, and went to my second appointment. The first day I was there for about 5.5 hours, and the second day they said because I seemed to handle it well, they decided to do it in 2.5 hrs. MISTAKE. The migraine was so intense I couldnt move; and the nausea...oh man... When I got to the ER they did a million tests and gave me something to help with the pain. My doctor said I could cancel the rest of the treatments that week and just stay home and rest. Four days later and the headaches are finally gone, but now I've got weird tingling in my hands that I've never had before?
I know for some IVIG is a real life-changer, but after such a horrific experience Im not sure I'll be willing to try again.