Reply To: Still Waiting

Anonymous
December 30, 2013 at 8:12 pm

I live close to Lafayette, LA. I called the main number on here and they said to call back after the holiday but Dr. I would see in April 22 was the best doctor to see in the area. I’m hoping maybe someone might get involved and can get me and earlier appointment. As soon as the holidays are over, I’m going to try to see if I can get a copy of my EMG so I’m at least ready to see a neurologist so I can get the spinal tap.

I have had a few people suggest on other sites that I go to the emergency room. That does not work around here. I went in April because I was in so much pain and I was dismissed after about 2 minutes and told to go back to my neurologist and that was even before I had this diagnosis. They were no even willing to look into what ever was causing the pain.

I tried to get help from my primary care doctor and he said to bug the nurse and she doesn’t seem very smart and had no idea about the spinal tap when I called her. She is new, but when I tried to talk to her about the pain patch I am on, she said to have the pharmacy fax the prescription and she would get it faxed back. The patch I’m on you have to have a written prescription and she should have at least known that.

I did write a letter to my neurologist right before Christmas in hopes that he will reply to a letter. He is off until the holidays are over with so maybe I’ll get a response after the holidays from him. That is my best hope right now. I’m also told I need to see someone who really knows about these types of diseases because there are times that the protein doesn’t show up and you can still have CIDP. That is what Ive been told. I belong to another site that you can message each other and on lady told me she was still diagnosed with CIDP and is getting IVIG fusion treatments and it was important for me to get the correct neurologist who was familiar with the disease.

I feel part of this is my fault because at first I think I was in a bit of denial, then I felt a bit over whelmed by all the information, and I kind of felt a woke up call when I had to get up and clean myself up because i had lost control of my bladder once again and I just thought I didn’t want to live like this the rest of my life nor have the damage because I was just sitting around doing nothing.

I”ll look for that ALA and see if I can find it. I’m starting not to drive much or not very far because anything that takes much concentration I start becoming tired. So driving very far I have to get someone to drive me now. Even just 18 miles. I can get there but the way back I have problems and I decided I just shouldn’t do it anymore.
Thanks for you all for answering!