New here as well
Long story which i will try and shorten here.
A couple of months ago I got slight tingling in my feet and hands, and the right side of my face became weak. within 12 hours both sides of my face were paralyzed and I had been diagnosed with bells palsy. They put me on a 5 day regimen of steroids and anti-cirals. since that didnt seem to be working I contacted a facial paralysis research center and they recommended me to a facial paralysis specialist fairly near me because the doctor I spoke with said that experiencing problems in the hands and feet as well as having acal apralysis on both sides of my face wasnt normal for Bells palsy.
The new doctor put me on another 10 days of steroids and anti-virals, and when i asked if I should go to a neurologist he said to wait and see how i responded to the treatments.
In retrospect, and after reading up on bells palsy, it seems pretty well documented that if you experience symptoms anywhere other then your face it isnt Bells palsy.
after about a month and a half of slow progression of weakness in my arms and legs and a ton of testing by a neurologist i decided to see because the “Facial paralysis specialist” seemed to be more interested in geting pictures of my face to put on his website before/after then he did in listening to what was happening to me. They diagnosed me with Guillen-Barre syndrome though it tooka long time and they weren’t 100% sure since I didnt have degraded reflexes, and i ahd some other symptoms that were not typical. When my legs started to get very weak, the doctor put me in the hospital and decided that even though he wasnt 100% sure I had GBS he was pretty confident after all the testing (SPinal taps, blood tests, EMG and NVS, and observation). They put me in the hosptial for 5 days and now a couple of weeks later I am starting to feel less “Numb and tingly” in my feet and hands, and my legs seem to be a little stronger then they were prior to going int he hospital so the doctor is confident that GBS is the right diagnosis despite the fact I had a much slower and less severe onset then the typical gbs patient, and it seemed to progress from the top down more then the normal bottom to top progression.
My question is this (So much for making it short). If I have GBS i have read that steroid treeatments actually make GBS worse, and I am wondering in what way and if there is anything I should keep an eye out for in terms of symptoms?
alternately since I seem to have developed the symptoms comparitively slowly, I am concerned that its possible I may have CIDP (in which case the steroids were the right treatment). Is anyone aware of any tests that my neurologist can run that will eliminate CIDP versus GBS (HE may have already run the test, he ran me through a ton of testing to eliminate as many posibilities as he could before putting me in the hospital for GBS)
Hoping someone can tell me the name of a test so I can scan the pages and pages of testing results I had copies made of which are written in medicalese so i can’t tell what the heck they are testing for in many cases.