I'm writing this in hopes that it will not bring sympathy my way but will instead let those new to the world of CIDP know that the road to being properly diagnosed is not always an easy one My wife and I were sent back up to UFHealth Neurology to see yet another Neurologist. My Neurologist who sent me there shortly after my spinal tap in November of 2015 when my spinal tap at that time showed a 65? and my Neurologist said that given my elevated protein and EMG tests that I had CIDP...but, he wanted a second opinion from UFHealth Neurologist...The Neurologist did his EMG and agreed that I did have CIDP. Now, this past March 24th, my wife took off from work to go with me to UFHealth once again to see yet another Neurologist for yet another opinion...This Neurologist upon greeting my wife and I, did not have any of my recent blood work or records that had been given ahead of time. After a short series of tests the Doctor said that she did not feel I had CIDP but did have neuropathy in my feet...We were then told that we would have to come back on May 12th to see Dr. Triggs and at that time he would do an EMG test...My wife broke down and cried in front of the Doctor and asked if somebody could please get me some help...The doctor said that she was leaving the hospital in a few weeks, (about the time her baby was due to be born) and she would not be coming back to work there as her family was moving out of town...My wife once again took off from her job to once again accompany me back to UFHealth to see Dr. Triggs. Once in the room the nurse said that "someone" would be with me shortly to do my EMG test...After about 20 minutes waiting, a lady came into the room and asked me to put on a gown and then returned to perform the "First part of the EMG test" which would be followed by the Doctor doing the rest of the test. She quickly found that I had severe neuropathy in my feet and upon completion of her part of the exam, said, I will go and tell the Doctor your ready...A few minutes lady, a man appeared in the doorway accompanied by a young man. The young man came into the room and sat down at the computer facing me. The older man stood in the doorway and said, "You do not have CIDP"...He did NOT introduce himself to my wife nor I, nor did he say hello, nice to meet you, nothing!..I asked him if he was going to finish the exam, to which he said "there is no need to, you have severe Neuropathy"...I asked, "what is causing the Neuropathy?, to which he said, "I don't know, perhaps it was something you were born with and it just started showing up years ago"...I asked about the elevated protein to which I was told, "It is probably due to your back surgery you had. My back surgery was in Feb. 94'...Needless to say, my wife whose a nurse, said that in all of her 30 years of nursing, she has never seen such poor bedside manner as that doctor displayed that day...Two weeks ago my left ankle gave way three days in row and my right went out once this past week. My Neurologist sent me last week to have foot/ankle orthotics made...I can only hope that someone reading this will be able to help my wife and I by putting us in touch with someone who can once and for all diagnose exactly what it is I am dealing with...
Sorry for being so long winded...