oh ok!! THank you for clarifying! 🙂 I appreciate that! Gosh, even every two weeks seems like a lot (frequency wise), Working full time in a demanding job, plus taking care of two kiddos 2 years and 11 months I can barely get my schedule cleared for every 3 weeks.. including the day afterward to “recover” .. though if I felt better more often, then changing up my schedule to do it more frequently would of course make more sense!
Speaking of kids.. what do yall do about school/germs etc? With just getting a simple cold/cough (it did have fever with it the first two days) and having such a set back.. I’m pretty paranoid about getting sick again.. however, we are thinking about putting our kids into school three days a week to give me an opportunity to have a few days off to rest (most of those day’s I’ll be at work, but every once in a while it will result in a day of rest).. The only reason we havent’ enrolled them yet is that I know they will get sick, which of course I don’t want, but then that will also get me sick sometimes too! Any advice on that? Thanks again yall!

Thanks Lori! Yea, if I have learned anything, nothing in neurology follows a textbook!!! 🙂 Mine started with a “floppy” knee, then hips, theh hands, shoulders and face and tongue!! My lower extremities are almost all hip (I don’t notice the knee anymore) and my hands are pretty bothersome, but thats simply becuase I use them more I think… Anytime I try to use my shoulders they fatigue faster than my hands I think… Though after the IVIG I could hold my kids and shop/hang clothes again (i couldn’t do it last time I tried) ..It is interesting how this affects everyone so differently!

Thanks so much for your response!! They currently have the diagnosis of CIDP for me (atypical however). I have had two LP’s the first one normal (protein was 39 or 45 I think), the second one was 95, though that time I had meningitis it was found (the morning after my first day of IVIG loading dose- I was inpatient in the hospital). I have had THREE Emg/ncvs since this all started! The first one showed demylenation around my right knee (my first symptoms and most affected leg), but otherwise normal, the other two (though I don’t think anyone checked that knee again- they all only did more distal (but did go proximal and distal, and thoracic for the needle emg part) ) and the others were all normal!!
My reflexes have been atypical this entire time – “normal” or brisk, however they have been considered brisk my entire life… now my right and most effected knee is decreasing..
They have done autonomic nervous testing, which came back positive/abnormal (my heartrate has been out of control since this whole thing started), and nerve/skin punch biopsies which all came back abnormal, they say correlating with “inflammatory” neuropathy/cidp.. The GI symptoms that preceeded my neurologic symptoms have perplexed them since the beginning- my ANA went from mildly elevated to even more so (negative, to 1:80, to 1:640), and now have a positive CMV..
with not being the typical CIDPer.. i question the diagnosis at times.. well a lot! I still fear worse things – like ALS (my first doc was afraid that’s what it was until that first emg).. so anytime I find a possible other cause that explains my other symptoms I get excited!!
The loading dose of IVIG defintely helped.. the 1st maintence dose was A M A Z I N G!!! I felt like a new person on that 4th day.. i just hadn’t even realized how sick I was!!!! however, this last time (i got a virus/cold/fever etc), my IVIG didn’t seem to do anything : ( .. I’m now getting an infusion of an increased dose (now 48 instead of 30g).. I’m terrified that it was just a fluke that it helped so much last time, and it won’t help me this time.. and like I said I fear much worse diagnosis at times..

THank you so much Kelly!! I think you must be right about that as far as the first IVIG having the most improvement to be made- my hubby says the same thing! 🙂 My dr today at my follow up also said that when I get a virus it can really set me back too, or make that round of IVIG less effective… I still notice improvement from the last IVIG (not much from the most recent)…. but things like holding my kids for any amount of time, which i could do SOOO easily after that last IVIG, I just can’t do right now (and i’m 14 days s/p this last IVIG) 🙁 hips and shoulders are pretty weak again too. Other things like my overall energy and especially my dexterity are amazingly better, if not completely back to my old hands! 🙂

I had my follow up appointment today, and my dr wants to increase my dosage from 30g to 48g (i weigh 130).. We talked about repeating the dose more frequently if needed after this next dose (i have cleared my schedule for my next dose to be next tuesday and unfortunately can’t budge that any sooner).. My dr agreed no immunosuppresants/steroids at this time… phew! Now I just pray this next round I’ll notice some decent improvement!!!

Thanks yall!!! As far as the gluten free thing.. I had about 2-3 months before my neuro symptoms started of GI symptoms and weight loss (it all started immediately after the IUD perforation/blood transfusion hospitalization).. I realized I looked awful- my face was sooo thin (and I have always been thin, but had a chunky face).. all my clothes were huge (and I was only 7 weeks post partum or so)… i think I made a mistake by continuing breastfeeding throughout the blood transfusion/iud trauma.. I regret it.. It wasnt’ until months and months later where I literally thought I was going to drop dead- heart racing and SOOO weak that I was pumping and pumped out clear/blue water.. It really hit me right then, that i was really sick.. and my son wasn’t benifitting from breastmilk that had no nutrients, and either was I !! so i stopped right then and there
My dr hospitalized me due to my heart rate/dehydration/malnutrition from the GI symptoms.. and it was that same week before the hospitalization that my neuro symptoms really started (My knee was “floppy” and then a few days later my hands went wierd, with the numnbess etc moving up).. I went gluten free the week I got hospitalized (after the weight loss), my bowel symptoms seemed to improve a bit.. but they didn’t fully resolve until the first IVIG dose (about 8 months or more after they started!))!!! Now i’ve gained 10 lbs since the IVIG, and eat much less! I had felt STARVING every single second of every single day until then.. finally I feel better! I cut out all processed foods for a while, but am back to eating some gluten free processed foods.. My celiac tests have been negative (but I was already gluten free then) I have two family members with celiac.. so until I get my life back or at least stabilized I think i’ll continue on .. as much as I CRAVE a REAL cookie!!!
That is interesting about the hormones thing!
My follow up is tomorrow, so I’ll defintely be talking about either increasing the IVIG dose or frequency.. I really don’t think the steroid side effects sound very good!!! Thank yall so very much!