November 7, 2011 at 9:38 pm
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!November 7, 2011 at 9:02 pm
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 scareyNovember 7, 2011 at 2:17 pm
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..