wow – that is a scarey story jgl!!!!   I have had increased symptoms since the shot… the water droplet sensations and burning, etc   but I also had to skip an IVIG that same time, so not sure which is causing which .. I may skip it next year!!!

that’s kind of what my neuro said as well, but of course I still questioned a little in my mind when did my symptoms actually start?? I defintely know when they really hit me.. but I might have had a hint of issues brewing for a while, that I was just writing off as “normal” wear and tear… I had a flu shot sometime in the year before the issues really came to a head though.. but it wasn’t obviously directly caused by it!!!

Great to hear from all of you too!!!! Thanks so much for the advice!!

I had my follow up appointment with my neuromuscular neuro last week and they recommended me get the flu vaccine.. they said people who had acute GBS resulting from a vaccine absolutely not.. but the slower onset CIDP that isn’t felt to be from a vaccine was ok.. and since I work around sick people and have two small kids who go to school, it was strongly recommended.

Do any of yall feel short of breath with your CIDP?? I have from the get go, that’s why they admitted me 1 year ago. I was so thrilled.. when I went back to the neuros office last week, they rechecked my PFTs (pulmonary function tests), and they were much improved (from 72% to 87%)!!! 🙂  and I was still feeling quite short of breath last week- so I was thrilled to see concrete numbers of improvement! 🙂

I went 4 weeks without IVIG this past month, which was a big mistake! I had the stomach flu and was so sick for almost two weeks, so couldn’t get it.. they were also going to start trying to extend me to 3 weeks .. though my symptoms started returning – swallowing difficulty, face drooping, hips and shoulders super weak, and my fingers went jello like.. also my foot is super numb (like I”m walking on a sand bag).. all from missing one round of IVIG!!!  Does this sound normal??  My poor veins ache from the IVIG>. they are so irritated.. I feel like they need the break!

Hope everyone is doing well!!!

thanks so much for your response!! No offense taken at all – I will be the first to admit I am an anxious mess at times haha.. I will handle it really well sometimes, and then when I have a flare or worsening of my symptoms I question my diagnosis (thats’ where my anxiety starts- my first appointment the dr told me I may have ALS), and since i’m not a perfect fit for CIDP (i do have tongue atrophy).. I have this fear eating me away that it is some form of MND or soemthing less treatable than CIDP.. I think if my ncv showed CIDP then i’d rest easier!! I have thought about seeing a psych, but then I think ugh, thats more money haha.. and that is another stressor right now! I guess I also think they couldn’t really know what i’m going through since they haven’t gone through it themselves.. but i’m sur ethey could still help calm me.. and another issues is I am SOOO tired of seeing dr after dr for this!! It is hard for me to slow down with my career and young kids.. we are about to sell our house and downsize which once we do so will allow me a little more of a rest, which I desparately need!
Glad to hear i’m not the only one with burning viens! 🙂

thanks so much yall!! The polyclonal gammopathy was found when I was in the hospital when i initially recieved IVIG.. it was found in my csf.. no one ever told me anything about it, but in their note they said it was likely a result of the IVIG.. I guess sometimes I wish looking through my records I would find a clue that would explain this all and it would be as simple as one surgery or one something and be cured! 🙂 One can dream huh?
As far as the papilledma goes- I have had three MRI brains- no tumor was ever found.. I had a spot on one of them – they just said a UBO (unidentified bright object).. I am thought to have possible celiac diease (all of my symptoms started after the IUD incident but that was followed by major GI symptoms and weight loss) when I read that you can have neuro symptoms with the celiac issues I have since (for over a year now) been on a strict gluten free diet, anyhow apparently if you have neuro celiac a lot of those people have UBO’s on their MRI’s too!?
I wonder if the neuro opthamologist coded that on accident- He told me I had nerve loss, looked like possible past optic neuritis on my left eye.. but said my right eye was normal. he didn’t even MENTION ANYTHING about papilledema, though he ordered a new MRI brain with orbits (which was normal).. I would have thought he would mention that- in his note it said I had pale optic discs BILATERAL, after him telling me i only had that in my left eye, i wonder if he got click happy and accidently checked that.. I was supposed to follow up with him in 2 weeks from that appointment, but each appointment lasts about five hours and they dialate you everytime, so I just cancelled as I just don’t have the time! But with reading that note, I guess I need to go back, and make sure he talks to me more face to face!! Also he is the only dr that has noted my ptosis! I have told everyone that I noticed my eyelid fold change form the beginning of all of this (i went to put on eyeshadow one day and thought how wierd my eyelids were totally differnet), they feel so heavy- when i’m more symptomatic they droop even more (eyebrow and eyelid).. he noted this in his chart without me ever mentioning anything.. huh?? I sure wish I fit into a pretty little box of something treatable(weather it be cidp, MG, etc) so that my mind didn’t wonder and start thinking of the bad things!!
thanks again for all of yalls help!! I’d be lost without yall!