Going Back to the Dr……

    • Anonymous
      November 7, 2006 at 8:49 am

      Well after much talk with family members I called Corey’s Neurologist’s office Yesterday. I pretty much told them that I am an RN, and the MD just sent him home with no treatment, he’s not getting anybetter and I just can’t take seeing him suffering. They got us in and I’ll update everyone on how the appointment goes. Everyone who I’ve come incontact with who has been touched by this awful disease in some way just can’t believe that the hospital sent him home after two days with nothing, no treatment, no meds, no rehab! I’m sorry for venting, but it upsets me! Has anyone else been sent home with no treatment and told to just wait it out?

    • November 7, 2006 at 9:26 am

      good to hear Erin, I really hope things start improving for him!

      Yes, I got sent home to suffer alone. It was very very scary. I finally got into a neuro after 3 months (almost to the day that I was originally hospitalized). The dr’s didnt seem concerned that I could barely walk nor take any of my complaints seriously. The tests were fine so as far as they were concerned it was all in my head.

      I am very glad your sweetie will be getting treatment. Prayers to ya!


    • Anonymous
      November 7, 2006 at 9:42 am

      I am glad to hear that the neuro is getting him in.

      Yes, I was sent home twice with nothing and told it was all in my head and I should breath into a paperbag to help me calm down. The doctors wouldn’t even run any tests on me the first 2 visits. I was so sick at the time I didn’t even have the energy to fight back. Then for the next 6 visits I was told it was all number of ridiculous things (slipped disc, dislocated rib, pinched nerve, etc.) before a Sports Med doc gave me a referral to a neuro. This was only after I couldn’t walk into the hospital under my own power, I was sobbing from pain, and struggling to breath.

      But I did go back to make a formal complaint – after I had a diagnosis – to hopefully prevent those doctors from doing it to anyone else in the future.

    • Anonymous
      November 7, 2006 at 1:21 pm

      erin, i’m really happy you are taking charge and standing up for corey. keep it up. you can vent anytime. give corey my best, and i’m thinking of the two of you. he needs to have treatment, either ivig or plasma exchange to stop the progression of the nerve damage. he also needs to have ncv/emg tests done to see if there is demyelination.
      there are alot of us who have been sent home with no treatments, many drs don’t know how to treat gbs patients. keep us updated and make sure you take care of yourself also.

    • Anonymous
      November 7, 2006 at 2:44 pm

      Thank you for all the support and guidance! I appreciate it so much! I will ask the Docotor about the NCV/EMG test or the Plasma Exchange. As i do know he was not willing to give Corey the IGG Immunoglobin IV Therapy, since his spinal fluid was not abnormal. I’m keeping my fingers crossed that we will get to the bottom of it and get him some much deserved treatment.
      Thanks and Hugs to you All!
      ~Erin ~
      RN and Caregiver

    • November 7, 2006 at 3:00 pm

      I read on the web somewhere (may have been here) that protein levels are usually not elevated until the second week or so after symptoms start. I’ll try and find hte link for you

    • Anonymous
      November 7, 2006 at 5:33 pm

      MissErin ~ you are one of our “precious caregivers”! Thank you. Keep advocating for you Sweetie until you get a diagnosis and treatment. The quality of his life depends on it! Thoughts and prayers are with you both 🙂

    • Anonymous
      November 8, 2006 at 3:43 am

      Erin, I admire your perseverence and hope all goes well. Just a word of caution, I soon learnt that saying ‘I am a doctor’ was more of a hindrance than a help, I allowed the fact to gradually come out through my medical colleagues in the hospital. Now everyone, including the cleaners just call me David. it is strange how easily professional backs are put up, but looking back 40 years as an intern, or as we say an SHO, perhaps I might have reacted the same way as the hospital doc you saw. DocDavid