Neuro thinks possibly CIPD, but wants to wait

nope, I got hospitalized at the beginning of it when the GI flare happened..(dehydration/malnutrition). I was shocked the neuro who suggested CIPD was just like, well we’ll just wait and see what happens.. meanwhile I’m getting worse.. I have the numbness/tingling feeling that moved from my leg up to my hands and forearms, now in my shoulders and neck.. I feel like I”m starting to have swallowing and speech issues.. does that happen with CIPD??
We just got back from my GI appointment, and he is going to try and get us into the university neuro here in Dallas.. he wants a “team” approach.. I’m freaked out right now with things worsening by the day..

Thank yall so very much for taking the time to reply,, it truely means so much to me! Do yall think this sounds like CIPD?? its wierd the odd sensation/numbness/pain tingly is moving up now into my shoulders neck and chin and tongue.. did yall have symptoms like this?? I still very much fear worse things like ALS… my reflexes are “normal” as per the dr’s… though they have all my life been very brisk.. We used to kid around playing with reflex hammers in school about how brisk my reflexes were, so i do think they are decreased from that..thats just in my knees my other reflexes are pretty dull i believe. did yall have any swallowing/numb tongue issues?
walking is getting increasingly difficult.. like i have concrete in my shoes..it’s scarey

thanks so much laurel.. Yea initially the dr (it was a physiatrist) said he was concerned for ALS (this was a friday afternoon) and then said we’ll do the EMG monday morning – talk about a BAD weekend.. i was a wreck, breaking down in tears everytime i looked at or thought about my little kiddos.. then he did the EMG and said it was good (didn’t include the face since i had no facial/bulbar symptoms at that time). Then the neurologist I saw a week later said it was a crumby EMG (talk about panic starting to build the second he said that), but that he wasn’t concerned for ALS, mostly since i’m young and have sensory complaints..
I guess I have fears at times that the EMG wasn’t done accurately and maybe they missed something, or they didnt do bulbar/face maybe something was missed.. but then i have to calm myself down and think I was already having hand weakness then, so it would have shown up. I tell ya under that much stress the mind plays tricks on ya!
I would defintely prefer GBS since it sounds like that “usually” resolves itself faster/more completely, but I’m not entirely sure. All I know is it’s freaky to loose function and it be creeping up into my face/head now, along with all over getting worse..thanks again so much for your time! I hope your husband is doing well!

thanks so much yall.. It’s hard to shake the ALS thing until we can find another diagnosis… after a dr telling us he was concerned for it, with things progressing It continues to scare me.. especially with 2 kids under the age of 2yr..
We are goign to call tomorrow and request an Lumbar puncture and to start IVIG.. i have a question for yall though- how “bad” do symptoms have to be before one “qualifies” for IVIG in general.. i feel all over weak, like concrete in my shoes and hands.. but have permanent never improving weakness in both thumbs and all fingertips..I notice with everything I do every single day, and I have a job where i must have good fine motor skills/dexterity.. I almost can’t do my job now.. but when the neuro tests for “clinical weakness” i pass all of their easy tests… i feel like they want me to have complete wrist drop/foot drop before trying a treatment for this all.. waht are yalls thoughts?? I just want to get better, and I don’t want to wait till i’m permanetly out of a job or have permanent dysfunction to get a treatment/IVIG started.. thanks again in advance!

Thank yall so much!!! Yea, it’s hard to know when it’s time to initiate a treatment like IVIG i think, I mean I guess one person can be fairly weak, but it not interfering with there activities of daily living all that much, while another may be less weak, but it interferes with there daily living more- depending on what they do each day.. I know i’m still able to do a lot, but to feel so lousy, and weak all the time is miserable, and hard if i can’t do what I went to school for so long to do or take care of the kiddos.. I had another EMG/ncv test today- now looks like no CIDP but benign fasiculation sndrome/isaacs syndrome (which i guess can cause percieved weakness and some weakness/stiffness) so they put me on an anti seizure medication which apparently can help the muscles function better.. so we’ll see! I’m hoping it will help! I’m just sooo thankful that this was a better/more detailed EMG/ncv test performed by the neurologist himself , and he said no als.. phew!! best words i’ve ever heard!!
thanks again yall for all of your help and good luck, wishing you all of the best!