Reply To: How long after onset did you begin to actually lose strength, not just weakness?

February 2, 2014 at 9:37 pm

Hi! Yes, it is extremly terrifying having something that no one seems to be able to figure out.. as you wait for all of these tests, and then are declining in the meantime.. I felt that they just didn’t get it.. I worsened and worsened until I crashed.. my first EMG was probably about 3-4 weeks after I noticed the weakness.. the first time I felt focal weakness was in my right knee, and that’s where the demylenation showed..however I Had foot tingles and numbness before that.. that moved up to the thighs.. and then the hands.. and all the way up to the face.. I didn’t even realize I was numb or tingly, as I had a new born.. I just was in such a fog.. I was 6 weeks post partum when I had a surgical procedure go very wrong.. ended up with internal bleeding etc.. anyhow.. I got bad GI issues after that for about 6 weeks and then the neuro symptoms started..
I felt awful, weak, GI issues, and then autonomic issues (resting HR went from 60’s to 140’s), I started walking funny.. and then maybe a week or two after my legs were weak, I woke up and went to grab my phone and couldn’t.. I went to switch on the light and couldn’t.. I had a floppy like paralysis.. The tips of my fingers (all fingers both hands) where like jello, no matter what I did.. microwave buttons, holding spoons, pens, you name it – i coudln’t do it.. I even went to cry and break down in tears, but at that point my face woudln’t even move to make the “cry face” which was even more upsetting… this worsened and lasted a few months before It affected my breathing so much that my pulmonary function tests plumented and I ended up in the hospital

Everyone kept saying I sounded like CIDP.. but the test was mildly abnormal, not enough to fit a for sure diagnosis..I had about 4 other EMG/NCV in those next few months – all totally normal.. I had an epidermal nerve biopsy showing significant abnormality consistent with non length dependent neuropathy.. my ANA was pretty high, and I believe most of my other test ok (including one LP).. During the hospital they repeated my LP, and the protein was elevated.. however i also had meningitis from the IVIG.. so no one knew how to interpret those results.. ANYHOW.. after tons of testing (autonomic testing was positive).. they said they all think I Have inflammatory neuropathy, likely a CIDP variant.. After the 1st round of IVIG I thought I was better, but was also so doubtful, I thought maybe it was just placebo affect.. after the 2nd round I woke up on the 4th day and grabbed my phone, turned on the light, smiled , sucked thru a straw… and mostly picked up my kids!! I felt almost completely normal again.. truly a miracle.. ( sorry I ramble)!!