When I started IVIG the doctor told me that some ppl can get aseptic meningitis so that is one possibility as to what you are experiencing.
I think you know yourself best and if you feel an LP makes sense then you are making a good decision.
Although I didn't have all your symptoms, after my first 5 days of IVIG I did have terrible headaches for about a month or so and felt "beat up" for a couple weeks. The headaches I got were worse than any headache I have ever had in my life. It hurt to lie down, my eyes hurt when I closed them, etc.
I was taking advil often and I thought I would never get better. Thankfully they did go away and I am now getting the doses spread out over each month as opposed to 5 days in a row. I have not had headaches since.
Hope you feel better and good luck tonight.
-D
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Thanks David,
Appreciate all of your posts to me. This has been a very rough month to say the least.
I just want my life back. This every day torture is ridiculous, inhumane, and criminal if you ask me.
If I didn't have kids to live for, I would not want to be going through all of this, but because they are my life and need their dad, I am willing to do whatever I have to in order to get well.
I will update you tomorrow, that is, if I'm home.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Good luck LT on your LP!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bettyg
Unregistered
posted
twister,
thanks for your update and we pray that everything will go well tonight for you to eliminate this problem FOR GOOD! hugs/kisses
hang in there; better days, months, and YEARS are coming, but right now ... we just want better HOURS dealing with all of this
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
LT,
Hugs to you. Holding your hand along the way. I hope the results offer a solution to your intense symptoms.
Your friend, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Well, let me say that the LP was no fun at all.
I was given 2 1/2 mg of IV Ativan rather than the versed and it did NOTHING. I was fully awake and not even yawning.
Numbing my back was no big deal, but it was very uncomfortable with that epidural needle going in. He must have hit a nerve or something and I was drenched with sweat when it was all over.
Opening pressure was normal to my disbelief and the fluid was clear, also to my disbelief.
Many test were ordered including B.b. and they are all pending.
Just got up a few minutes ago and feel like the usual crap I always do except now I have lower back pain like I had back surgery.
I have a headache, but it doesn't seem worse than the one I always have, so I will just take it easy today as I always do these days.
I don't understand why I'm still running fevers. My basic blood work was normal and CT of the head was negative.
I guess I just have to ride out this IVIG. I'm almost half way in to the half life of the IVIG, so perhaps in another 40 days or so, I'll start to get some relief from what appears to be a constant Herx.
As soon as I get the LP results I'll update them here. Thanks for all of your guys support.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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bettyg
Unregistered
posted
twister, thx for reporting in; sure was wandering about you. xoxox
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