well, i finished my ivig last night.. I felt PRETTY crumby with a pretty awful headache yesterday and i knew my spine hurt,low grade fever chills etc.. thought it was all a "normal" part of IVIG.. and if it was going to make me better, its all well worth it! I ended up having the Lumbar puncture they wanted to do today, and it came back as meningitis.. elevated protein (unsure if related to the meningitis or not).. usually they said that meningitis will tell them if its likely viral (mostly lymphocytes) or bacterial (polys), and apparently mine was split likr 48/46% ugh.. soo I was supposed to leave tomorrow and go home, and try to be back at work this weekend.. but now I'm here for at least another two days on antibiotics until the culture comes back where they can 100% confirm its aseptic meningitis
Has anyone else been through this? I really am feeling better today than yesterday.. Though my fatigue and droopy eyelid did return this afternoon which made me sad.. One of my biggest upsets is that they are saying now I can never have IVIG again!! is that right from what yall have heard?? ugh..
So we still dont have a firm diagnosis for my issues- MANY tests pending.. and now I'm just hoping I can break out of here in time to be home for CHristmas.. I'm sad since my kids can't come visit me now - i'm in isolation and even though I"m pretty sure it's aseptic meningitis I don't want to risk their health.

Anyone been through this?? what did you do about the treatment afterwards? They are saying IVIG effects will hopefully last a few weeks and then we will discuss PE depending on my symptoms and test results etc

Also does anyone know if getting meningitis will make MG worse if that is what i have? They sent in respiratory to do lung function studes on me, I wasn't sure why, unless they are concerned that it could worsen the situation of course.. Good times!

Here, I'm quoting myself from your other post.

IVIG can cause meningitis. You didn't have symptoms of it before the IVIG, so I'm pretty sure it was the IVIG that caused it. What did your doctors say?

So why the lumbar then? Were they looking for anything else, like signs of MS or lupus? When do you get to see a report?

Any time an MGer is in such bad shape and in a hospital, it's pretty routine to do breathing tests. Did they wheel you over to the pulmonology unit for testing (probably not since you're in isolation)? What were those results?

Yes, any infection can make MG worse. You need to rest as much as possible. Seriously, pamper yourself. And it will take longer to recover now. You cannot do the same holiday stuff you are used to. You will have to be a spectator this year. Socializing is one of the worse things for MG, all that sitting up straight, talking, etc. It can make breathing and swallowing much worse.

And it is entirely possible to have BOTH viral and bacterial meningitis. Oy, 50/50 does not mean it hasn't made up its mind yet. Take care.

Thanks Annie!! boy were you right!??! They were looking for MS, Lupus, elevated protein for GBS/CIDP basically any and everything, though they weren't looking for meningitis.. I wondered if I had it, and I also wondered how that would effect the LP... guess I got my answers there! ugh.. soo no fun at all.. Guess it's better I"m being treated for the worst case scenerio, if I hadn't had the LP I would have just kept saying I had a little headache and flu like symptoms.. and if it were bacterial I could have gotten into big trouble.. so who knows! I"m sure its just IVIG though..99% anyhow I was actually supposed to work on christmas eve and christmas, but I guess that's not happening! I feel bad to not follow through on a holiday, but I also know its a necessity now.. I hope i'm at home by then!!!
I do feel like I have more strength now than I did when I got in here friday, despite freeling crumby, I feel like swallowing and everything is in general easier.. lets hope I at least get some good effects from the trouble of the IVIG!

The first time I had IVIG I ended up with aseptic meningitis. It was diagnosed by symptoms - stiff neck, super painful throbbing headache, backache, fever all starting the evening of the second dose of ivig. I didn't have any testing and was prescribed a medrol dose pack which immediately relieved the symptoms. I've had ivig every month since and have had a headache almost every single time. Not as bad as the first but the neuro suspects it's a low level aseptic meningitis each time. Yuck. I'm sorry you've had this problem.

Oh, rats, I'm so sorry. I've been following your story--was so glad to hear that you had decided to go to the hospital, and that they'd admitted you, and that they were giving you IVIG even though your diagnosis isn't firm...and now this awful set-back.

I hope things get better fast. Sometimes IVIG can take a while to kick in, to its full extent. You may still improve. Meanwhile, all that other testing is a good thing. I hope you get home for Christmas, and I hope that this very, very quickly becomes a good story you can look back on with awe, and think how far you've come!

Abby

I had what appeared to be aseptic meningitis after my second day of IVIG. I say "appeared" because they did NOT do a lumbar puncture. They ran my infusion slowly both days -- and I drank a LOT before, during, and after (more than any other patient the infusion nurse had ever seen).

I had a SEVERE headache, chills, aches -- ended up in the ER where they ran a CT and gave me IV pain killers. I had a headache (on and off) and a rash for about 6 weeks. The IVIG sent me into a 3 month MG exacerbation.

I have always suffered from migraines. I later learned that people with migraines are at greater risk for aseptic meningitis AND if you get it once, you'll probably get it again (if you have migraines). Here is the article I found:

http://www.annals.org/content/121/4/259.full.pdf

I'm so sorry this happened to you. IVIG works MIRACLES for so many MGers.

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."

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.