Likely CIPD from GBS
February 11, 2024 at 4:40 pm
Hi everyone, I’m new to signing up but have read all of the useful information everyone gives here for awhile.
Ok, so the 1st time which started in like the beginning of April 2022. My pain started in lower back, and then numbness/weakness to my pelvic area to where I could barely walk. Then the pain went to my feet before up my legs. Had foot drop on both sides. Pretty much lost all strength in anything from the waist down, and couldn’t walk, legs & feet burned agonizingly uncontrollable 24/7, the slightest touch would make me want to scream even like a sheet moving a little across my leg. That went on for around 4 months. Now if I don’t take 5 meds I get pain and stiffness from them. Bearable any pain though thankfully. The only thing I had that was off was my EMG which was everywhere my neurologist said. My sister happens to work for a non local to me neurogist, so she showed her and she said GBS and mine eventually did too.
This time around was the beginning of this January and I
woke up and thought I had just slept weird on my hand and this was not super late either like 2 am maybe, so I moved and went back to sleep. Woke up and wrist just doesn’t work at all. I can move my fingers, not perfectly though. So they said partial radial nerve palsy which emg also showed. It also showed pinch nerve in elbow and another place that they said was strange because I haven’t been injured over there. Both neurologist are on the same page again and are saying CIPD and that IVIG treatments are the way to go now.
I just wanted to get some of y’all knowledgable opinions. I want to make sure I go through the right treatment because that 24/7 severe pain and not walking before I would never wish on anyone ever. Thanks, everyone in advance! 💙 and of course I’ll be around if I need to fill in any blanks and sorry it’s so long.,
February 11, 2024 at 11:54 pm
Sorry, I should just add they are waiting on my hand MRI on the 19th to make sure there is nothing physical wrong with my arm before diagnosising it at CIPD. Idk if it’s related but I have total body jerks at times also,usually over and over once they start and most of the night.
February 12, 2024 at 1:34 am
First off, it is CIDP, not cipd. What medication are you on and what is your dosage? I know this disease sucks. I’m fortunate to be dealing with it fairly well, but I know I could one day wake up and experience what you are and that is worrisome.
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