to Miami Girl

October 29, 2007 at 11:16 pm

Thanks I am glad I found this forum. I did post a short description of my story on the main forum yesterday because I am just getting used to how this works. I know Jason believes in glyco but after my experience I definitely would never trust it again that is for sure. Also he did want to hear from someone that had used it and it did not work and I feel that I pretty much am the poster”child” for that. LOL I am lucky though because my husband and his family are very supportive and help me with whatever I need including running me to appointments when my husband cannot take off work. I think that the more support that you have from whatever way you can get it helps. I am amazed at the number of people that are going through similar things as I am. As far as my doctor knows I am the only person in my state that has CIDP. I have found you must be a very strong advocate for your own medical care when you have something so rare it is hard for some medical personnel to understand what is going on with your body. When I talked to my doctor about hydro he agreed because it is also great for fibromyalgia so he wrote a prescription for it and my insurance is going to cover par or all(they haven’t made the end decision yet) for it so we had a hot tub put in and I am able to do the hydro as often as I can depending on the day I am having and I definitely notice a difference when I use it at least pain wise. Againthank for the welcome and I am glad I found this forum.

to Miami Girl

June 29, 2007 at 7:32 pm

Miami Girl,

I am so sorry to hear of your dreadful experience with the new doctor. Unfortunately you are an example of how important it is to find a health team that “fits”.

But I don’t think you should beat yourself up over trying to find a less expensive long term treatment for your CIDP. Every patient is different and you had no way to know that prednisone would be so bad for you in particular. I am not in a position to say money is no consideration either. I am deeply grateful to be a “cheap date” for whom prednisone works at this time.

Welcome to the forum,