Thanks so much Kelly!! I appreciate it!!! I just got the report from my neuro opthamologist (I am going to an internal med dr tomorrow to get established with a PCP.. I have only been seeing my obgyn.. but honestly can’t get past the fact that she did something she wasnt’ supposed to do with the IUD.. and that seemed to all start this all)..
Anyhow, the neuro opth note said I had papilledema and pale optic discs bilateral.. along with eyebrow and eyelid ptosis (something I have noticed since this first started, but didnt’ even mention to him – no o ne else ever notices.. but apparently he did)! I also found that my serum gamma electrophoresis showed polyclonal gammopathy! Not sure of the signficance of that either.. but it’s something none of them ever mentioned.. I think getting my chest scanned might be a good idea!!! ick!
Thanks again!

Thank yall so much!!! That is interesting kelly, that emily also had pain behind her eye- did they ever say it appeared like she had attacks of Optic neuritis?? I saw a neuroopthamologist a few months back – he said it appeared as if I had ON in the past (in the eye I had gone to a suburban opthamologist about in the beginning- at the time he said it was fine- i had no idea 2/3rds of the time it looks fine on their exam when it is acute).. The neuro opthamologist said he sees eye involvement like mine at least once a month from CIDP patients (there are only 6 of these drs in Texas, so he sees a lot of wierd stuff apparently). Each appointment is about 5 hours there ugh.. but I do need to head back again for follow up
Do yall know if I do go get a second opinion if the dr puts down a diagnosis for billing purposes that isn’t CIDP that insurance can “choose” to take their diagnosis and then “opt out” of paying for my IVIG? that’s my biggest fear!
Kelly – you are right, I would spend everyday in a dr’s office fighting if it were my kiddos… that is a good point.. and most of all above anything I need and want to be here for them for the long run!
Limekat- funny you mention that – I had weeks where I would kind of drool, and spill drinks on myself, either missing my mouth or just mouth dysfunction in general! Before I got my first round of IVIG I tried straws.. but (how sad is this) I coudln’t even make enough suction to suck through a straw!!! It took all the effort I had and seemed SOO hard I coudlnt’ even do it.. same thing If I blew my nose it would go all funny ,… I was WEAK! Now I can use straws and when my swllowing gets bad it is easier! interesting about your eyes- bright lights hurt mine all the time now too!

Thanks so much for all of yalls help (this last round of IVIG has worked wonders)however I am 11 days out and do feel it starting to wear off.. I danced around with my kids yesterday – showing my daughter some old ballet moves, haha.. I haven’t been able to be that p hyscially active in a year.. felt SOOO good.. I just want to go for a jog!!! though that would probably be a bad idea! I miss working out!
Limekat- haha I know, I don’t realize how much I say yall (when I lived in the northeast everyone would laugh at me for it haha) now i’m back down here and saying Yall just makes sense! 🙂
Thanks again so much for all of yalls help! I really appreciate it!!

aww, thank yall so much.. I can’t tell yall how much I appreciate yalls support and advice!!! I only got a loading dose one time (when I was inpatient in the hospital) and it was only a 3 day loading dose at that (not sure of how many g/kg as It was all foreign to me at the time).

I dont’ feel 100% comfortable with the dr we see.. we are so thankful though I am an atypical case of CIDP that they did try the IVIG in the first place.. thankfully it worked and worked AMAZINGLY!

The further away I get from the loading dose, i defintely feel like it doesn’t work quite as well, though sometimes more than others.. ..
I feel like the dr we see is more of the old school “doctoring” and doesn’t like hearing recommendations from their patients.. though when I told them it was wearing off before the 3 week mark and having relapses they did respond to increasing it to every 2 weeks.. I am afraid to step on any toes I think.. as this dr at least did try the IVIG.. I know someone at the infusion center that went to get a 2nd opinion and they put her IVIG on hold due to her being an atypical case (also of CIDP).. I hear she is quickly declining and doing pretty badly since the IVIG.. SO, I think after hearing that I am extra afraid to “rock the boat”

I wish I could be with a dr that I felt more comfortable with.. but am scared to risk a change of diagnosis, revoking of the IVIG or anything that could make inurance wiggle it’s way out of paying for the IVIG!

I want to feel like I did after that 2nd IVIG all the time, which was almost back to my old self.. So, I think I will ask them if we could do another loading dose.. as I just hate teatering on the edge of major dysfunction!!

Yall are all right as far as seeing it as an investment in my life, families life etc.. it is just hard with being the bread winner/insurance holder, Mom, the one who cleans, cooks etc.. then I have a very demanding job on top of it all.. We dont’ have any family to help us, they are all out of state.. with a 14 month old and a 2 year old we are obviously busy!
My husband goes with me sometimes to the appointments.. honestly he doesn’t understand why I want him there, and it is kind of a fight to have him go with me- he just says he doesnt’ understand.. But I was alone at my first dr appointment who said that I may have ALS (1st dr before any emg).. and that was pretty awful experience.. ever since I hate going to any appointment alone!

Does heat bother anyone else?? I can just melt after showers it seems, and then if I am out in the sun, or if the sun is even shining through the window when it hits my affected areas it just tingles and burns like crazy!
Pat- I hear ya.. I have always been very active – surfing, hiking, mountain biking.. then I was pregnant for 4 years on and off and just getting back into running/jogging and excited to “get my body back” haha! who knew!!

limekat- I was also there once – barely able to brush my teeth.. coudln’t carry the kids at all, and even temporarily holding one would weigh me down so much I coudl’nt get my legs out from undernreath me to walk with the added weight! I am SOOO thankful IVIG Is working.. but I agree, there is room for improvement no doubt

Kelly- did Emily ever have pain behind her eye when she moved it?? I swear I have had one eye that lags a little since this all started.. and its almost like it can get pulled, it gets SOOO sore, it is really painful to move it when I have exacerbations! … she had swallowing difficulties as well right?? I would really like to do that type of loading doses.. I think I would feel like a new person!!!
Thanks again yall so much for your help!

Thanks Kelly- I have been wondering if that is what I need.. ever since my first relapse since the 2nd IVIG I feel like each IVIG helps tremendously, but I have never felt quite as amazing as I did after that 2nd IVIG.. and feel like it works less and less, I have been wondering for a long time if a second loading dose would help me get back to that AMAZING feeling I had after the 2nd one? Does it seem like a lot of people do have another loading dose? I’d rather that than adding on immunosuppresants I think!

I meant to add- I was in the sun this weekend, and ever since my most affected areas feel like I have a prickly pear poking them.. And im not sunburned at all.. It is a really wierd sensation, and strange that heat and sun exacerbate it so!

heather- I hear ya.. I have a 1 year old and a 2 year old and have been sick since my son was 6 weeks old (he is my 14 month old).. The first dr I went to (on a friday afternoon) said.. I am concerned it might be ALS.. ok have a great weekend- see ya Monday for your EMG!?!!!! I was a SERIOUS WRECK!!!! I knew what ALS was and had secretly feared that.. but to hear a dr tell me that alone in a room.. it was so sureal I can’t even express! Anyhow that EMG was clean, well the needle part.. I had demylenation on my most symptomatic area (my knee at the time) hands had already been hit too… all my NCV were slow, but they aren’t sure if it was due to my extremities being cold or not..
I had three EMG’s by three different doctors within four months.. the last one at the ALS clinic in the university here… I was sure this was when they were gonna tell me it is ALS/MND.. at this point I had slurred speech and swallowing issues, knee/leg, hip, hand shoulder face weakness and visable hand/muscle atrophy and tongue atrophy…. NO ALS.. needle emg totally normal! My reflexes have been diminshed or absent in my upper extremities all along, and most affected knee is less than my less affected side.. however they are still brisk on both knees most of the time (it is such a subjective test.. i hate it-each neuro tells you your reflexes are different i swear!)

I have had fasiculations for about 4 years now.. just in my legs for the first two (and I had a numb right foot, i alwyas thought – my shoes were too tight, or when I would jog it would get worse up my leg- figured I had a pinched nerve in my back.. never thought much more of it).. now i have fasiculations EVERYWHERE.. though they are less with IVIG now.. tingling- heat makes this WAY worse.. i was in the sun today and i feel like i have prickly pear all over me.. pretty bad shocks all over (IVIG has helped this except when I have relapses).
It hit both hands of mine at the same time and I literally couldn’t text, scoop formula (had to give up breastfeeding at 7 months when I came home and pumped out water – I had serious GI symptoms before the neuro symptoms), hold silverwear or do my job which requires very good dexterity.. I can do all of those things now THANK GOD afer my second round of IVIG…
feel like I have been given a second chance at life.. though I still fear ALS very much.. i have ptsd from that dr appointment!! (sorry I ramble)
have you had an emg yet?

Thank yall all so much!!! I can’t tell you how much yalls replies mean to me, especially in my freak out mode like I have been in this past week!!! I was a nervous wreck most of today.. woke up thinking MAYBE swallowing was a little better.. hands DEFINTELY felt better thank goodness! However, I was completely freaked out by the swallowing.. legs/hips almost back to normal. but, then this evening I took my pills and I could swallow SOO Much better! I picked up crayons to color with my daughter and had my dexterity back mostly.. Talk about a RELIEF!!! this whole thing is so crazy!!! I’m still not back to what I was a few weeks ago.. but I”m only 2 days post IVIG.. Usually it’s 4 days before it really really hits me well.. what a roller coaster!!
As far as breathing goes.. I haven’t felt any difficulties breathing this time.. i have had chest pains the entire time, especially with deep breaths or when my heart starts racing.. and I get it during IVIG too, though a different kind.. Difficulty breathing for two months that gradually worsened is what landed me in the hospital for my first IVIG back in december.

Shellbones – I’m sorry you have had to go through this, but man it is nice to hear that someone else had gone through similar and is doing ok! I have never tried any steroids whatsoever.. I wonder if I should?? Since they think I have multiple autoimmune issues.. it seems like it could help!
Lori- thank you – that helps me calm down a bit hearing that there are more options out there if this doesnt’ work.. I stress about the immunosuppresants with work and all.. if it will be smart to continue where I am.. but I guess i’ll cross that road when/if it comes to that. I was worsening before this new brand of IVIG.. I was just hoping it would “kick in”.. how many days until yall feel it kick in usually? for me its generally around 4

GH- my dr is aware that I have had “awkward” swallowing since this all started.. they did the autonomic testing on me a while back which was postive (heart rate in the 160’s – whew I felt bad when that was happening)! My resting heart rate when this all started was in the 140s!!It was awful! No difficultly breathing this time..Thank goodness! I can still walk and talk thank goodness, but I think my dr isn’t as concerned due to that as well.. Though they are treating me which is what matters!

Thank yall.. I’lll keep yall updated.. I hope that the IVIG continues to work in the coming days.. and I think i’m headed towards steriods/immunosuppresants or something in the near future.. i’m having too many relapses it’s just not well controlled!! this is stressful!