I have experienced the same misunderstandings with my family practice clinic and my Ear, Nose, and Throat doctor. I even brought information about CIDP to my family practice clinic. Yes, I suffer from chronic bronchitis and chronic bouts with sinusitis. I have always had allergy problems, but never had chronic bronchitis/asthma until 2006. In fact, I rarely had a cold. Now I get bronchitis every time I get a cold. It is terrible!!! The hardest thing to clear is my sinus problem. It takes forever to get rid of it. And I probably keep some infection there between the obvious bouts of upper respiratory infection. The doctors think that it is not necessary to give me antibiotics when I am not running fever (I rarely do) and my white cell count does not change even if I have an infection. Both of these diagnostic methods are not necessarily good indicators of infection on people like us with weird immune systems.
I almost cried when I ready your post as we do want you to feel welcome here. I am somehwhat new at all of this as well. Like I said in a previous post, we were on a 6 month journey with our two year old daughter and we were seeing the CHIEF of Neurology. He told us that he was an expert in stroke but that he knew about what she had. I TRUSTED HIM and he is a very bright guy. He even teaches residents on a regular basis and is well published. He just did not know cidp. I started reading and reading and reading and I figured out she needed more. I contacted one of the top cidp doctors in the world and he said that he did not feel comfortable with her as she was 2. He refereed my to a doctor at Ohio State Medical Center who then referred me to another doctor. When I googled this doctor, HE HAS WRITTEN BOOKS on cidp. When made an appt. and he said why isn’t she receiving tx and we said the doctor did not recommend it. He was really mad and he put her on tx and she can walk and everything now. I ask him everytime I see him if she has permanent damage from no tx for so long and he said since she is 2, he doesn’t think so. I do not want my daughter to have permanent damage at two. The people on this site have helped me so much nd encouraged me to research things for my self. WE care about you.
I would like to support what Dawn has said. Dr Lewis seemed really awesome at the Conference. I was must impressed with his approach that it is as a person that one has to consider these diseases–what impact it has on your life and how best to go from there to keep living life. Also, he was a strong advocate that pain is under recognized and needs to be managed in order to then deal with the rest of this. I did not hear anyone else that was a practically oriented nor as wise in life.
i’m a stinky sweater too!! i’ve been getting ivig weekly for the most part of two years now. only stopping briefly to experiment with PPE. i take imuran and have wondered if that could be the cause. i sometimes have to change shirts in the night from sweating so much. the shirt will smell oober funky!
just another bonus to this fun illness!!
Chrissy, I hear you. I have some very close friends, and a wonderful husband and family, but the conversations, caring and honesty that runs through these threads is at a different level than where I go with my closest friends. When I read about Miami Girl, I just couldn’t get her out of my mind, so I kept her in my prayers.
Pam, thanks for keeping us posted. We truly are so connected here, and for me, although it is to total strangers, I know I can count on everyone here to understand when no one else does.
I have a similar story to yours.I must go now
but will communicate later.I have many question.
Iam back for a few questions. Do you have any clue what provoked your cidp ?
Have you had any serious illness?if so how did it affect your cidp??
do you take any medications ??? Supplements? special diet?
i feel the exact same way many (most?) days and i am 9 years post gbs!! it’s just one of those things that has these lingering residuals and everyone is so very different…..keep your chin up, do what you can when you feel like you can….i so understand, this is very hard to learn to do…..it’s still very trying for me most days……i know i haven’t been any real ‘help’, just wanted you to know there is no way you are alone on this…..take care..much love, becky in wv
i have to ditto nancy! i feel exactly the same way, some things are just not the same as before, but….that’s ok with me (on most days, anyway! haha)! we learn to accept and deal w/ life’s lot….that is the hardest part, i think, sometimes? God bless all…..becky in wv