My symptoms before GBS dx:

    • Anonymous
      May 26, 2007 at 10:27 am

      In case this is interesting or helpful to any of you, I found this on my computer and thought I’d share it. I have no memory of doing this (momory is pretty fuzzy around the worst time of illness), but apparently I dictated my symptoms to my husband and he typed this up so that I could print it and take it to my appointment with the second neurologist. What follows is a description of all my symptoms leading up to when I was finally diagnosed with GBS. Since GBS presents so differently in different people, I thought this might be an interesting read.

      Symptoms began after severe intestinal virus that lasted about one day on a Monday, two weeks ago.

      I felt fatigued but otherwise fine by next day (Tuesday); beginning Wednesday, started experiencing tingling in hands and feet.

      Throughout the week tingling, numbness, and prickly sensations expanded through arms and legs; and by the weekend was into chest, abdomen, and face.

      Sunday evening, close to one week after the illness, I experienced my first noticeable attack. I thought it was a seizure of some sort; felt like prickly fire was welling up deep inside body and exploding into face and lips, and I could not move or talk easily. I almost passed out. Similar attacks have continued ever since that first incident; each time such an attack occurs, my overall condition worsens.

      Dr. xxx admitted me to xxxx Hospital for testing, thinking I might have neurological disease. I was given CAT scans of head and chest, full-body MRI with and without contrast, spinal tap, EMG, EKG, dopplers of legs from hip to ankle, and many sets of blood analyses.

      There was no sign of fever, infection, or any notable illness. The only abnormality was the presence of white spots on the brain MRI.

      I was discharged with no diagnosis. Upon returning home, my symptoms worsened, and fearing the unknown, I returned to the hospital.

      Previous numbness and tingling turned into painful burning and stabbing feelings all over body, and I began to feel my chest and throat burn when breathing; it felt like being stabbed in the chest when I would breathe during and after these attacks. In addition, I developed a headache (a painful pressure headache at the top of my head accompanied by painful pressure in ears that impeded hearing), relieved partially by putting head face down on bed.

      I had no appetite, and experienced vomiting, nausea, and a very metallic taste in mouth. Food felt like buzzing metal. I was unable to walk unassisted, and had progressively worse coordination of muscle movements when trying to hold items, move fingers, or stand. Disorientation, difficulty speaking quickly also occurred here.

      I was given a spirometer when the nurse noticed decreased lung capacity; I could not reach 500 mL on the spirometer (rather than the normal capacity—close to 3000 mL).

      Unsure as to what else to do for me, prescription was given to me for 80 mg Prednisone via IV (administered at 9:30 am). After about seven hours, I felt relief from my symptoms and slowly regained sensation in my body. I began to smell normally, my headache began to go away, and I started to regain appetite and ate small amounts. Relief lasted from around 4:30 pm until 4:30 am; at that point, I began having the attacks again, and symptoms returned in full force.

      I received another 60 mg later that morning, with similar results.
      Since my second (last) discharge from the hospital on Saturday, the Prednisone prescription (two 20mg doses per day) has been insufficient to prevent worsening of symptoms. Symptoms grew progressively more painful and intense. I especially fear breathing complications and chest pain, and slowing muscle coordination is frightening.

      In two weeks, I have lost fifteen pounds.

      At this time, another 60mg dose of Prednisone yesterday afternoon diminished headache and ear pressure in under 45 minutes; however, burning/stabbing feeling and painful skin did not go away.

    • Anonymous
      May 29, 2007 at 1:59 am

      suzanne, after i started recovery i too found a note in my purse. i had listed all my symptoms i was having while i waited 6 hours in a waiting room prior to my diagnosis. it was about 2 weeks and 5 doctors later before some one knew what to test me for. they seem to think it was too early for the other doctors to correctly diagnosis this but when i read what i had wrote while i waited i think they could have at least been doing some kind of testing or something. who knows. barbara