How I got help

    • GAT
      March 2, 2010 at 7:47 pm

      This is my first post but I’m not new to the foundation nor to CIDP(14months). As I read various post there seems to be a common theme, fuzzy dianosis and/or doctors not listening. This is what happened to me. For months I suffered and spent my time with Uroligist. I had no symptoms in feet or arm, no weakness no fatigue. Just pain where men hope it won’t be. After eleven doctors including Neuroligist that said I was fine,I got desperate. I made an appointment with one more Neuroligist. I decided they do not listen or hear as I assumed. It must be’another whinner again’ I decided to try another approach. I typed a one page bullet statment, listed all sympyoms and time line, all Doctors with summery of test so they would quit repeating the same one’s over,and a list of qestions. I gave it to a great Physician Assistant and was supprised as that was her first.Wthin minuets knew what I had. After the normal test to conferm I started IVIg and doing fairly well. The lesson learned. Doctors may read and analize better then listening. Makes you wonder. Thanks for listening.

    • March 2, 2010 at 9:25 pm

      I second that GAT, when we have new symptoms or multiple questions/ideas, I fax the info a couple of days prior. Then they have time to think it over. Glad you got an answer and treatment. Keep getting better!!!

    • March 2, 2010 at 11:06 pm

      Hi Gat and Dawn,
      That was valuable information about presenting symptoms in written form.
      Thank You!

    • Anonymous
      March 2, 2010 at 11:40 pm

      I made it a practice to go to every neuro appointment with written symptoms and questions.

      It always seems as if the direction of the appointment goes one way or another, and then what you want to say gets forgotten. If I have written questions, I always get them answered before I leave.

      Dick s

    • March 3, 2010 at 8:40 am

      I have a ginormous binder with all kinds of “stuff” in it. I have dividers in it. I keep copies of the letters I fax and leave space to write the answers when we get there. I refile everything and keep it for reference as well as documentation should there ever be an insurance issue or whatever. It is a good way for me to also measure backslides and improvements based on the issues we present each visit. i also think my ginormous binder and the letters let the docs know you mean business and will not leave without an answer. I have to say, our neurologist has ALWAYS been supportive and answered all of our questions, i think he appreciates the orginazation. I could be wrong:D We have been blessed with our neuro!

    • Anonymous
      March 3, 2010 at 2:33 pm

      Great advice. I have my entire health history including insurance info, family contacts and all medicines I am taking (including OTC) stored in an easy to read document on my computer. I update as needed and print and take to my doctors, hospitals etc whenever I go. They appreciate it – and I usually only have to write in “see attached” on their forms. It is fast and complete. The document used to be only 1 page – which is the best – but has now gone to 2 pages, as a result of the section called “Hospitalizations and surgeries” Oh, well – such is life.