My day as a CIDP lecturer

    • Anonymous
      April 8, 2009 at 2:53 pm

      So I finally got to be “The Expert” in CIDP. A few weeks ago my Neurologist called me and asked if I would do him a big favor and come into the class that he was teaching to 2nd year medical students on Neuropathies. He said he wanted them to hear from someone who had both CIDP and Diabetic Neuropathy and I gladly said yes. I told him my hope was to give them the “human” side of a diagnosis and perhaps to educate on the do’s and don’ts of treating a person. It was pretty amazing because my neurologist kept thanking me and saying I was the teacher and he was there to learn as well as to teach. It was also interesting because I got to listen to the entire lecture which gave me great insight into how CIDP is arrived at as a diagnosis, what tell tale signs there are and how this neurologist in particular dealt with patients. He put up a Venn diagram of his diagnostic process which actually helped me feel better about how he came up with my diagnosis. Then after some time lecturing he had me come to the front and tell my history and did some of the preliminary testing to show the students what to look for. Muscle wasting, balance, range of motion etc. Then we allowed for questions which interestingly were more about the socio-economic aspects of disease than symptom oriented questions. Later, one of the students came down and thanked me and said she will always remember the content of the lecture because of what I had talked about. So I felt like all these years of pain and struggle in some way paid off. I took all of our experiences into that lecture hall with the hope of educating and bringing this disease out of the dark. The head of the Neurology department came to me after too and asked if I would be interested in doing more of these lectures in the future, so maybe our collective knowledge will actually be utilized for direct care as well as for research purposes. 🙂 I felt really fortunate to have had that opportunity and it also gave me the message that my Doctor values my thinking and experience and that I am really being heard. I no longer have any doubt as to his care and that we are working together as a team. I just wanted to share this with you all because without this forum I could not have come as far as I have and anything I am able to do is on behalf of all of us.
      All my best,

    • Anonymous
      April 8, 2009 at 8:13 pm

      Hi Linda,

      That is an awesome story. Your contributions will defineately make a difference with many I am sure. I don’t know how many patients it takes for a doctor to get familiar with CIDP alone never mind with complications of diabetes but several have a first hand start. More doctors should welcome exposing their colleagues to our condition and I am sure both diagnosis and care will come quicker. I know I would be glad to share my time knowing you’ll help others.
      thanks Linda,


    • Anonymous
      April 8, 2009 at 10:49 pm

      I did not do a lecture but I did a power point on CIDP for my anatomy and physiology class. I am going to school for a certified medical assistant. My husband was the one with CIDP. The teacher asked us to pick a topic that was close to us or a family member. I picked CIDP because no one knows what it is. I made a 98 on the power point. I did a lot of research after I found out my husband had it. What surprise me is a lot of doctors do not know about it. After class many of the students came up to me and told me it was a very good presentation. It was also therapeutic for me because I never really realized how much my husband suffered until I did the power point. I believe all doctors need to know the early signs so they can send them to a neurologist.I am really missing my husband but I know he is not suffering any more. My beloved husband passed away Nov 21st 2008 just this passed Thanksgiving. We did not have much of a Thanksgiving or Christmas dinner. Valentines was hard for me also. I have started getting depressed because we always had such a big deal at Easter. We are going to celebrate Easter with turkey and dressing since we never had the turkey dinner. April 21st will be 5 months since he passed. Good luck on your treatments.

    • Anonymous
      April 8, 2009 at 11:55 pm


      Thank you for taking the time to talk with the new batch of docs.

      The more people that hear and know about CIDP the better the chances are that people will be treated sooner and hopefully with better results.

      My family doc often has medical students and asks me to come in and chat with them…tell them my story.

      I also have CIDP and diabetes. Some days are better than others.

      Take care

    • Anonymous
      April 9, 2009 at 10:06 am

      Great Thread…..I like to hear of the positive influence we can have on the medical community! Thanks for being a spokesperson Linda.

    • Anonymous
      April 9, 2009 at 1:45 pm

      Thanks for taking the time and effort to help these new doctors understands what is like from “our” side of the desk. Hopefully they will have a little more insight when a new patient walks through the door with “unexplained” systems that will help with a quicker correct diagnoses and treatment.

    • Anonymous
      April 9, 2009 at 9:35 pm

      Linda, You Are Awesome!!:) Thank You for going through all that you did to make your presentation soo positive. You Rock Girl!!!:cool:

    • Anonymous
      April 10, 2009 at 12:07 pm

      Doctors probably get two days of neuro issues in year one of med school before they go and ‘specialize’. Given the extent and length of med training… two days doesn’t last long?
      Linda, and also Cookiegirl, you both put a very human and personal face to what is CIDP! The more of us that do this? Educate patients, doctors, therapists, nurses and all? The better off our world and our CASE for care will be.
      And, don’t forget? You might encounter one of these folks you’ve lectured to any time in the future [tho I surely hope not!]. These folks will KNOW that there’s more to the ‘package’ than meets the eye and treat you accordingly.

    • Anonymous
      April 13, 2009 at 1:50 am

      Thanks for all of your kind replies everyone.. I am thinking of you and hopeing everyone is doing their best today.

    • Anonymous
      April 13, 2009 at 12:41 pm

      Thank you Linda for the taking the time to do this. You must really have a great Dr as well for even thinking to ask you to volunteer. If only all dr’s were like that, eh ?

      I admire your strength…you are in a good place right was a long time coming for you. 🙂

      thanks so much for everything.