Reply To: Isolation

June 6, 2017 at 7:12 am

Hi Sandy,

Please know you are not alone. I was diagnosed with GBS 8 months ago, although I now think (again) it may be CIDP. Confirmed yesterday by an audiologist that I have a damaged nerve in my right ear, it’s been ringing for a few days. At least you have your husband… as I was going through GBS my husband thought I was making up all of my symptoms (even though I had confirmed NCS showing demyelination, reports from my neurologist stating GBS or CIDP and visible symptoms) and decided to yell at me every night, have an affair and leave me with our two young children. I’m 39 and often wonder what the future holds. Also in the process of selling our house bc we can’t afford it and trying to move. I worry about being able to hold a job down, get insurance and raise a 5 and 7 year old. No family close either. It is isolating – I have a neighborhood friend that always asks me to go for a walk, thinking I just need to get active to feel better. No one understands. I have a neurologist appointment tomorrow to address the ear ringing, but I have low hopes this guy will do anything. I had my PCP submit a referral to the U of Virginia and they said they would not accept me. Not sure if it’s because they thought I had GBS based on my doctor’s notes or what, but they lady I spoke with said that they cannot help me. So here I am, no one at all to help. Not even a Center of Excellence will help me. I’m thankful for this forum and everyone who helps (Jim!) and wish everyone the best! We all understand each other and that helps.