Thank yall! Things MAAAAAYYBEE a little better, it’s hard to tell, and then part of me wonders if it’s just placebo effect of me just thinking it’s better.. I do think though I am mildly improved, but must say it’s not the reaction I was hoping for… I guess I was hoping that suddenly I’d be able to use my fingers and none of my muscles would be weak anymore .. ha.. silly I know.. at least I don’t think i’m any worse.. so that’s good! My generalized muscle weakness seems a touch better and tips of fingers mildly improved as well as speech. No answers still..hoping some bloodwork will come back in the next week or so and we can get answers and get a treatment plan set up too. Thanks so much for all of yalls support and I hope yall had a Great Christmas!

Thank yall all so very much!!!! I cant’ tell you how much I appreciate yalls responses! I am sitting here in isolation still in the hospital- going insane from boredom and cabin fever, but feeling a lot better..
I had not taken lyrica since the 2nd IVIG infusion.. the paresthesias were gone,.. generalized motor function improved.. well today I started feeling some of the paresthesias come back- already!!! Is that normal???? I am still improving in the generalized weakness. the focal/finger weakness I thought was a touch better last night.. but now seems to be going back again.. maybe it’s just due to me feeling bad all over… ugh

Thank yall so much about the information about the IVIG.. I read yalls responses and asked the attending again about the IVIG… today he seemed to think maybe i could get IVIG again.. but it would be up to my treating physician (he is the hospitalist neurologist), he said it could be risky for developing side effects, but I said I can tolerate uncomofortable side effects if it will keep this ugly beast at bay! So, i’ll have to discuss it with my dr at follow up once i finally escape from here!

I like the idea of spreading and slowing down the IVIG treatments, I got horrible migraines when I took birth control pills.. but since being off of those pills x 5 years and being on asprin daily I don’t get them anymore.. I wonder what the mechanism is between migraines and the IVIG causing mengitis is? very interesting!

Hopkins sounds like they have it down to a great system!!! Depending on how all of this goes we may consider that… I also hear there is a great CIDP specialist in houston (i’m in texas) and he got a very large grant for CIDP research in his hospital down there.. we may consider seeing..

I wish they would have done the LP before the IVIG.. Now the elevated protein (of 90) we are unsure if that is significant or not- is it from meningitis or is it from the underlying issue? Ugh.. i feel like there is still such a long road to find answers ahead of us.. I am just so incredibly worn down right now. I just pray we find something that helps, and also that I can be home with my kids for Christmas- this isolation business is for the birds ! 🙁

Thank yall so very much!!! Ugh… Yea the rate was over 100 last night, (i was passed out from the benadryl, so not sure how high they got).. They are talking about going 50 tonight.. I feel pretty crumby now.. body aches, chills headache/spine just hurts, everything hurts.. I can’t tell for sure improvement, but i do not have the need to crawl out of my skin sensation which I have had daily for months and swallowing does seem easier too.. speech a little better. and the nurses are saying my face is less “droopy” (especially one eye).. So thats good news!
I am scared to get my hopes up too much that this will work, but the thought of it actually working makes me want to jump up and down, even though that would hurt really badly right now. the thought of it is very exciting! I pray it helps!
Its interesting to hear everyones different reactions to the IVIG as far as improvement in symptoms too! Since I don’t have a diagnosis, I sure hope that I can at least see some definite improvement, to know whatever i have CAN get better!
My emg’s/ncv’s are clear, so that doesnt fit into CIDP plus my reflexes are normal (maybe a little brisk, but they have been all my life), They will be repeating a lumbar puncture tomorrow and doing evoked potentials.. So who knows. It will be nice when we get an answer, but if that never comes I’ll just be happy knowing that I have the ability to stop worsening and hopefully get better!

I am drinking tons of water.. but when the headache hit this morning I couldnt even sit up to eat.. So they did start iv fluids.. i’m trying to down lots of water before we go again here in an hour or so!

Thanks shellbones and Lori! I appreciate it!! Yea the diagnostic limbo phase is defintely scarey… I just want to know if i will stop worsening or hopefully improving! Just continuing to worsen and have no answers is quite scarey
Things worsened dramatically the past 5 days or so.. started having some difficulty breathing, heart rate was high as well.. went to the dr and they admitted me.. Started my IVIG trial loading dose last night and will be in the hospital for a few more days getting more.. along with MANY more tests..
As much as I don’t want to be here, I think it is good that they are testing a lot of different things and at least trying IVIG! I Just pray it works! i’m so scared it won’t work and then I don’t know where that will leave us

How long did it take yall to notice any improvement with the IVIG? THey keep saying how I sound like GBS.. though it has been going on for a whlie now.. EMG is clear. . so who knows! MG is on the table as well, atypical presentations of everything.. I wonder if when I leave here if they will give me prescriptions for steriods or any other meds, or do you just go home and see if the IVIG kicks in usually?
Anyhow.. time will tell I guess! thanks so much for yalls help!

Wow Jessicah, sounds like you have been through a lot!!!! It really amazes me, especially with this neurological stuff, how so many people have to go to so many different doctors!! I could never be a neurologist since it seems like it’s all so incredibly subjective! I feel like most things you dont have to go and get multiple opinions, mabye a 2nd opinion, but it seems like a lot of people on here and that i’ve talked to see 4, 5 or more neurologists before nailing down a diagnosis.. I have seen.. humm, gotta count them all- 6 totat neurologists!!! 3 that were neuromuscular specialists, and I sit here worsening with no one really knowing what is going on! I have told my husband a few times – I wish I could just Pee on a stick like a pregnancy test and we could just get our answers! haha.. Wish it was that simple!
With all of this going on, I have opted to NOT get my flu vaccine this year! I don’t give my kids the flu vaccine (they do get everything else though), and I never got it until I worked where I am very exposed to it daily, I started getting it so I wouldn’t bring it home to my kids (if the vaccine was effective that year), but not this year- no way! I did make my husband go get one though, if the flu hits us, we need one man left standing to take care of us haha.. that is IF it even works!
It’s crazy what can set off our immune systems! Hope your doing well! Thanks again so much for your help!

Thank you shellbones, I appreciate it!!!
yea your right – with all of this autoimmune stuff everyone presents so differently.. I wish that all universities would do a “team approach” like Mayo does.. I could just go for a few days and see a rheumy, neuromuscular doc, GI, etc etc.. and they could all get together and have a pow wow and then give me some treatment already!!!
I am getting SOOO much worse the past 3 days, it’s really crazy.. My chest hurts when I try to take a deep breath (I noticed a few weeks ago when I went to sneeze and inhaling I had all over chest discomfort) I just feel short of breath and SOO weak all over! My facial muscles barely move, and I can barely stand up for more than a few minutes without having to sit down due to muscle fatigue.. Then the paralysis of my fingertips is worsening too, as is tongue/speech.. this is just crazy! I am all for being “special” as long as someone can get me to a better functioning better feeling special!! I am MISERABLE!!!!
Thanks again so much for your help!!! 🙂

Thank yall so much for your time!!

Jessicah- Sounds like I’m scheduled for the same as you had – punch skin biopsies, I think is what they are unofficially called, but my dr called them an epidermal nerve biopsy, not an actual- cut out the deeper nerve biopsy like others I have read about that can have nerve pain and may not even yield great diagnositic results either.. From the sounds of it it seemed this punch skin nerve biopsy was a newer thing, the one dr that does it is booked up until march, but looks like as of now we are going in Feburary- she said it would look for nerve damage/neuropathies etc…. Do you know , does it just look for small fiber neuropathies, or can it look for CIDP type neuropathies too? (not really sure if cidp is small or large- apparently on my exam, I have both abnormal). They think this whole thing has affected my autonomic nervous system and are going to be doing additional testing for that, other than the biopsy. I hope it gives us answers about it all – especially my motor dysfunction!! Did you get any answers from it?

Shellbones- thanks, that is good to know!!! I’ll make sure that they check it before proceeding with the IVIG! I’m a tough stick for an IV apparently, I have these huge veins, but they all tell me how “valvey and knotty” they are ha.. but I tell ya, someone can poke me with a needle a million times if it means that I can start getting better from all of this! I’m READY to get back to feeling decent and on with life again!
I really appreciate yall, thank you!