Aseptic Meningitis- IVIG fun ugh!
 

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.

thank yall so much! I appreciate it!!

Ugh, I'm still in isolation on antibiotics until the cultures get back - hopefully tomorrow, and hopefully they'll be negative and I can be at home with my kids for Christmas! It's breaking my heart that I can't see them right now!

Suddenly- it's interesting I feel like the people that I have read about who develop meningitis all become symptomatic during their 2nd dose.. That's when I did as well.. I wish they had done the LP before starting the LP, that way I could just be miserable at home!!! THe dr did say he woudln't recommend more IVIG, but he is the hospitalist neurologist and said my clinic neurologist may think it's just fine. so we'lll see!

Stellatum- Thank you!!! Gosh, i sure hope your right!!! I want to bid farewell to this crazy year of 2011 and hopefully we will have a much smoother 2012! I get so excited just thinking about looking back on this and finally feeling better!I hope that I still have some improvement to go from this round of IVIG... I think I am better, but I would like to see more improvement!

Jana- thank you!! wow.. I used to get migraines back when I was on birth control pills, but haven't had them since being off of them, and on my aspirin. I can't believe it sent you into a THREE month exacerbation!!!! That's awful!! what do you do for treatment now? I worry that I initially had good results, and I think I"m still feeling better, however last night I was feeling so sick my speech became slurred badly and my eye drooped and my breathing felt hard again.. ugh.. and then all day today same thing - and my jaw just feels shakey and too heavy.. My jaw muscles vibrate with exhaustion if i try and close my mouth. So I am worried that I might not be a lot better off.. I'm just hoping that somehow there is still some improvement that has yet to be seen!
I did however comb my hair today and didn't have to take many breaks- that was an improvement from when I got in here, so hopefully it will be a net gain!

All of my exacerbations are three months long -- almost to the day.:confused: But, at least they DO end.:) Only my slurred speech is a constant.

I only take Mestinon. Like several others in this group, other meds/treatments aren't in my best interest (don't want to die just to get rid of MG symptoms, ya know??). Although I "bottomed out" with plasmapheresis, my neuro thinks that he has figured out a way to use it IF I ever go into crisis. MY goal is to stay healthy enough NOT to go into crisis. ;)

Of course, I don't have any children and I'm able to just STOP and rest when I need to. In order to try and avoid exacerbations and "crises" (that looks funny -- I'm trying to spell the plural of crisis) -- anyway, to avoid worsening MG, we have to avoid STRESS and avoid getting sick. Staying away from sick people, for me, is MUCH easier than avoiding stress. Stressors are EVERYWHERE. Sometimes, I even have to turn OFF the TV and avoid the news page on my computer! Tranqs aren't typically good for us, so we have to keep ourselves CALM. "Ain't" always easy. But, better than the alternative -- hospital on a respirator.

I'm on Topamax for migraines -- and it makes me STOOPID -- so, if someone has already said this -- and I haven't noticed -- PLEASE forgive me. MGers are SNOWFLAKES. We are ALL "unique". We have different symptoms, different reactions to meds, etc. So, just because I, for instance, had a horrible problem with both IVIG and plasmapheris, that doesn't mean that you will, too. And, just because someone else had a bad time with Imuran, that doesn't mean that it will make you sick. Some of us can take morphine for pain -- others might have their breathing compromised.

You WILL figure this out -- and listening to the advice of the members of this group will help tremendously. I learned SOOOO much from experienced MGers after joining groups. I don't know WHAT I would have done without support!!

thank yall all so much!! I just wanted to let yall know I got to escape the hospital and come home and be home for Christmas with my kids!!! I am feeling REALLY run down.. my body just decides it's flat out tuckered out and It's about all I can do to just sit up striaght anymore.. I have however seen improvement with the IVIG- my speech is noticably better - until the end of the day it goes a little still.. but it was BAD this past week and I find myself hesitant to say the words that were consistently slurred, and then am pleasantly suprised when they come out "normal"! I am still completely wiped out after all the hospital fun, and defintely don't feel anything like super woman, which I wish I did!
Is that about normal for yall who have responded to IVIG? Should I expect to continue feeling better? Overall not as great of a response as I had hoped, but I don't know if the whole meningitis and being in the hospital on antibiotics etc effected my response

Jana- wow, so what do you mean by "bottomed out" on PE? That is what I'm told we might have to do.. sounds scarey though! I am just praying we get some answers in the bloodwork that was sent out this past week - praying that the Musk will return positive so that we then have an answer and treatment and then the relief that it's not something untreatable/unmanageable.
Until then I will just try to take it easy, which isn't easy.. My face and well every muscle still is tuckering out very easily..


Does this sound "typical" for MG? My face and shoulders are the worst for msucle fatigue/shakiness after use, and then my trunk if my symptoms are REALLY bad.. but my hips, but below my hips all my muscles fatigue easily, but nothing like the rest of me.. is that typical? My hands are just a constant, maybe a little better after IVIG? Thanks again and yall have a Merry Christmas!

I respond better to the second series of IVIG. I know how you feel when I got my first IVIG I was expecting more. Everyone reacts differently. Are you on Mestinon? My sister has a droopy face and the Mestinon helps her for a couple of hours. Hang in there with your doctors. These things take time. The stress of the holidays and the hospital are not helping you. Get a couple days of GOOD rest and see how you feel.
Mike

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.