Hi Kim @kim1234, Welcome to Connect. I'm not sure if your post was directed to the member who started this discussion (@foxauthor) or if it was a reply to the post above yours by @kimegraves. I don't think the member who started the discussion is still active but @kimegraves and others might have some suggestions. Here is a link to the website mentioned by @kimegraves.

-- https://www.gbs-cidp.org/.

Hi Kim
Sorry to hear that you also have been diagnosed with CIDP. I also have this disease and currently am doing well. I was diagnosed in 2021 and immediately started IgG infusions, immunosuppressant therapy, and steroid treatments.
My symptoms have gotten much better, however I do have periods that my symptoms do get worse. I also find that exercise, healthy diet, and avoidance of stressful situations decrease the number of flair ups that I have. I have to say that being your own advocate is very important. If you see that your symptoms are progressing please discuss this with your provider that is managing your care. Are you seeing a provider that is experienced with this disease and how to manage and treat. It is suggested by the literature to find a provider that is experienced in this field. This disease is not know to all providers and sometimes they treat the symptoms and think it is peripheral neuropathy but the pathophysiology for CIDP is different.
GIB-CIDP.org is a great organization and this website has a list of specialists to this field and much more information. Please keep us informed and if you have any further questions we are always here.
Kim G

@kim1234: iv/ig has helped to keep my disease relatively stable. I get two infusions every three weeks. It is expensive but some health insurance plans, including standard Medicare, do cover treatments. I have it in my feet, ankles, and it started to cause my calf muscles to atrophy. However, I also work with a wonderful PT in addition to my infusions and I exercise at least 4 times a week. That has helped. I have regained the muscle I lost. I've had the disease for about 14 years. It was incorrectly diagnosed in the beginning and I had no treatment. I got a correct diagnosis close to three years ago and that is when I started treatment. I developed this condition after having had cancer 4 times. One of the treatments I received was immunotherapy and I believe caused the CIDP although that was never confirmed. I am cancer free but have this disease. Uggg. You might want to try PT with someone who works with individuals with spinal cord injury (that's the best option as many PTs just aren't equipped to deal with CIDP and are not aggressive enough). PT, if done correctly for this condition, is painful but very effective. At least that was my experience. Also try iv/ig if your insurance will cover treatments. Good luck.