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← Return to CIDP diagnosis after severe GBS long ago, where do I start?
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CIDP diagnosis after severe GBS long ago, where do I start?
Neuropathy | Last Active: 5 days ago | Replies (9)Comment receiving replies
Hello @toolman53, I would like to add my welcome to Connect along with @celia16 and others. It's not an easy task when you are trying to find answers and help for conditions like CIDP. It's good to see that you are actively doing research and learning as much as you can about the condition. I'm not sure if you have seen the Shining Through CIDP site but if not it has a lot of great information that might be helpful to learn more about CIDP and available treatments - https://shiningthroughcidp.com/.
You might find it helpful to scan through other CIDP discussions on Connect to learn what others have shared. Here's a link that lists the different discussions - https://connect.mayoclinic.org/search/discussions/?search=CIDP.
It sounds like you have already contacted the University of Chicago. Do you have any upcoming appointments setup?
Replies to "Hello @toolman53, I would like to add my welcome to Connect along with @celia16 and others...."
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Hello @johnbishop, I hadn't heard of Shining Through CIDP but went there and was pleasantly surprised to find such a helpful website. The first person stories are very good for me to hear as they give me hope. There are also resources for places and people that can diagnose and treat me. This is what I'm looking for as rare diseases/disorders have fewer dollars to gain so are generally overlooked by the medical establishment.
The CICP discussions on Connect to learn will also be helpful as there are a lot of varied experiences, opinions and information concerning CIDP listed. I only became aware of Mayo Clinic Connect yesterday and am impressed with this resource and people like you and @celia16 that really try to assist others with life altering problems.
Could you help me understand how to hyperlink relevant people and websites?
I'm going to recontact GBS/CIDP Foundation for the specific neurologists to see at UCM as I found and lost them. I was going to set up an appt. yesterday with one of them.
Thank you do much for your help @johnbishop.