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@cgrogers hello,
My name is Kim and I also have been diagnosed with CIDP about 18 months ago. I think it would be wonderful to have a support group here at connect.mayoclinic.org.
I have look at all the sites that John sent you and they have also been very helpful.
I also had a very difficult time obtaining a diagnosis! I am a healthcare provider myself so I pushed and pushed and pushed until a very seasoned neurologist helped me and then once the diagnosis was made started my IGG infusions. I currently receive infusions every two weeks and the symptoms improve for about 10-12 days. I have said this on multiple group discussions that I also find that a low carb-sugar diet, daily exercise, and no alcohol also improves my symptoms. This can be a very frustrating and difficult diagnosis. I also take things much slower than at one time, if I over do I pay for it the next couple of days.
If you ever have any questions please feel free. Keep us informed on your progress.
Kim
Replies to "@cgrogers hello, My name is Kim and I also have been diagnosed with CIDP about 18..."
Hi Kim! Thank you for your feed back. Are you saying your symptoms improving for 10-12 days and then? Are you back to where you started?How long did it take to diagnose you? And do you know what triggered it? Mine was absolutely out of blue. Although I’m a 76 years old, I was healthy and walking 3-4 miles a day when suddenly start having these symptoms in my toes and hand. The first thing neurologist asked was - have you had any flu vaccine lately? Diabetes? Covid? Flu? None of the above. Last Covid booster was mid December and my symptoms started in April. I did fall in February and fractured my wrist, but the recovery was very easy and normal. Could this be a cause for my immune system to collapse like this?
I’m starting my IGIV GAMMAGARD today. Would like to know more details about your diagnosis.
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@cgrogers Can you tell me what were the symptoms that led you to a diagnosis of CIDP?
Also, do you have to have infusions forever?