Anyone been diagnosed with CIDP? It's very rare

Trish
There is a wonder GIB-CIDP
Organization that has everything, research groups, support groups, education, meetings and general information. The website is
GIB-CIDP.org
There are many online support groups and online symposiums that cost nothing. I think you will find this organization very useful. May I ask what town do you live in?
Kim

Yes I have CIDP started in my left arm in 2009 working its way through my left hand side of my body...its now in my left leg and moving rapidly to my right hand side leg....I am on a high dose of cortisone atm and taking strain trying to accept that both legs are deteriorating so quickly...and you...whats your history...

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/.

Yes, I have also been diagnosed with CIDP. My symptoms are numbness, mostly feet, and the test that confirmed this diagnosis was the EMG. Short compression socks help me a lot, I even sleep with them on.

Yes I have CIDP - diagnosed in 2014. Started IvIG in January 2015 and have managed to arrest the disease, or at least stifle the progression and live a relatively normal life. Please check the GBS-CIDP Foundation website for more info and contacts in your area, Go to http://www.gbs-cidp.org
I am a local liaison in New York City but we have them all over the country. Most of us have either CIDP or GBS.
Good luck and stay positive!

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

I was diagnosed with CIDP about two years ago after a misdiagnosis 8 years earlier. I get iv/ig two times every three weeks. My situation has remained relatively stable. I also work with a physical therapist weekly. Unfortunately, I cannot reverse the damage. I have no sensation (total nerve damage) in my ankles and big toes on both feet, however, my calf muscles, which had atrophied, are now stronger and I can get up from kneeling on one knee. My balance is better. Prior to iv/ig, I fell several times. I fell once even with treatment but nothing beyond that. At my last check up/EMG, my neurologist found I have the beginning of nerve damage in one finger of my right hand. I do wish I could reverse the damage. I told my neurologist that I would be open to trying experimental treatment but he told me that I should stay the course since I'm doing well. Has anyone been able to reverse the damage caused by this disease and if so, what medication did they use?
Thanks.

I was diagnosed with Lupus in 2017
I have been having numbness in my feet, especially my toes.
Could I have CIPD along with my Lupus. I have also had COVID-19 this past Thanksgiving. I had fluid on right lung with the COVID-19. Ty

@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.

@paktoledo: I have a friend with Lupus and she has neuropathy in her hands and feet. For her, it is part of her Lupus. I would ask your doctor if your symptoms are related to your Lupus. They are in the best position to know and treat you effectively. My non-educated guess is your symptoms are likely from Lupus and are not CIDP. It sounds like you have enough going on medically and trust me, you don't want CIDP or anything else. Good luck.