Frustrated

I had Guilleab Barre in Aug 2014, I was lucky that I did not end up on a vent. I received IVIG and the paralysis stopped at my hips. I went through a long inpatient rehab and was able to return to work as an RN. I did have issues with tingling, numbness and a lot of painful leg aches especially on busy days, it would take me a full day of rest to recover after those days. On June 2 I started having chest pain and shortness of breath with increased tingling and numbness to my hands, feet and legs. My neurologist was out of town so another neurologist saw me in the hospital. I live in a rural area where most Physicians have never seen a pt with GBS or CIDP, I was started on IVIG but I began have severe chills and shivering. He stopped the IVIG and put me on high dose steroids. I did improve after several days but was unable ambulated without a walker, Since being released I have fallen 5 times, The numbness and tingling in my toes and fingers cont. I am in a wheelchair most of the time and receiving physical therapy at home 3 times a week! Thank God my regular neurologist is back! The neurologist who saw me in my neurologists absence told me he thought this was “all in my head” and suggested I see a psychiatrist, I am just curios if any one else has had a Physician suggest that the residual effects of the Guillean Barre (CIDP) was “all in their head”? I am so frustrated that I can’t seem to get the help I need as we live in a small rural area where most of the Physicians are not familiar with Guillean Barre much less CIDP. I would appreciate any feed back or suggestions from anyone as I really have no clue what the next step should be? I had convinced myself that all would be well once I recovered from GBS and was very shocked that the symptoms came back and now I am stuck with no where to turn. Thank you and God bless each of you!

Ask your neurologist. Neurologist is the onljy person that can help us. Unless you are very lucky and have a gp that has done some training, most of them have heard of GBS/CIPD but dont know anything about it. Xx