Reply To: SCT… What is the success rate.

August 24, 2012 at 6:23 pm

To the GBS CIDP Foundation:

Why do we not have the most up to date reports, writings etc. for the diseases we suffer. All the information for the most part is fragmented and retrieved from this place and that. Is it not the aim of the foundation to provide us with everything we need to know about the illnesses we suffer that are sisters/variants ect. to GBS/CIDP? The website and informational packet seems to mostly focus on GBS.

I pose a purposeful effort from the foundation and those like-minded to provide this website with a section solely devoted to CIDP and it’s variants. This would require purchasing reports and getting permission to post them. This might also include a place where we can post questions for the docs represented on the board.

Because I have one of the rarest variants to CIDP – Anti MAG Polyneuropathy. I have to educate all my docs less of the diagnosing neurologist. In fact it was my tenacious effort that I finally have a diagnosis. Having said that I think it paramount to have a resource for those of us suffering with these crazy illnesses to get useful and up to date information. And, it would be a great place and resource for all of our docs as well.

Right now my hemoc/onc. is scratching her head as to how to treat me since I don’t show signs of Waldnenstorms, Multiple Myeloma, POEMS, Amyloid or any other lymph/cancerous disease. However, my numbers continue to increase (IGM, m-spike and a couple of others). The research I have to date is that Rituximab (originally thought to be help) is temporary at that. IVIG and prednisone don’t work for the variants; I understand chemo and or another targeted chemo-type drugs might help but my hemoc/onc. is not sure and rather than put me and my body through the harsh chemicals without due diligence she is going to present my case to other hemoc/onc for a round table discussion.

All of that said Anti MAG Polyneuropathy with the MGUS condition is diagnosed one in one-million. And, there is to date not enough noise about such few like us to pursue targeted testing etc. like there is with ALS, MS or one of the other sister conditions. I propose that any help for us will come from research focused on one or all those disease types.

I am willing to volunter to help get things going if the GBS/CIDP Foundation is willing to set aside funds for the project. It would require research, purchasing reports and getting permission to post the reports, expanding the website to include all the pertinent information and scheduling the board of doc’s to go in rotation to be available to respond to our questions.

I have experience in all these area’s as my former profession was an Ad and Marketing Agency owner – before the illness stopped me in my tracks! In my business I developed marketing and advertising strategies for medical, oil and gas, business to the general public etc. Our focus was however, was primarily business to business. In our line up of services we designed and developed web, film, video, all print types, outdoor and promotional.

I’m sure I can speak for all of us here by saying thank you for your consideration and we look forward to hearing from you!