CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

To @janstar61
I am sorry to hear you had such a bad experience with a provider. Also, I have to say that I have been receiving IgG infusions for that last year and a half and it has been nothing but a positive experience. I have a diagnosis of CIDP and I get infusions every two weeks and the only side effect I have experienced are mild headaches. I have a history of difficult IV sticks, however the nursing staff are very experienced and I did not need to have a port inserted.
Many times insurance initially denies coverage of IgG infusions, but if other treatments have been implemented without success then most insurance usually ends up covering the infusions. The providers must document rigorously. Keep us posted.
Kim

My initial neuropathy started in 2012 after knee replacement. Mild symptoms numbness in fingertips and arm weakness. Progressively got worse over period of years and after going to several doctors and many tests finally got diagnosed with CIDP around 2020 and put on monthly treatment of IVIG in May of 2020. Initial treatment brought about the most improvement. After initial treament I didn't feel I got much better, but my follow up visits showed and battery of neurological tests showed I wasn't getting worse. I was able to get disability benefits, do some part time work, and take on a pretty vigorous exercise regimen. Life was good! Last week 4/11/23 had emergency surgery for ruptured blood vessel in abdominal area and that surgery went well, however my neuropathy symptoms went to another level. Currently need my wife to do so much for me and have limited function in my hands and feet & legs. For first time since this process I'm really scared for the impact this may have on my life. I'm 63 year old male and see a neurologist at John Hopkins. Thursday I have IVIG treatment and hopefully that can have an effect on my current condition. Anyway wanted to join the group so we can support one another and our experiences can give one another hope
'

Hopefully you can start infusion ASAP. My husband gets his infusion therapy every 3 months for 5 days and it has been working since 2020. Good luck

Hello @taa. It is great to have you here to give and receive support along this journey.

You will notice I have moved your post into an existing discussion that you can find here:
- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy): https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

I did this to allow you to connect with members like @milliemae who has already joined you to share her husband's experience, as well as members such as @kimegraves @danawyn and @tedjones77494 who can hopefully provide support.

How did your IVIG treatment go yesterday?

It was fine, don't feel much relief though. Trying to make appointment with my neurologist now to see what next steps we can take.

Yes I have, going on 2 years now. I get them every 3 or 4 weeks. Initial one was most beneficial as my grip strength, fine motor movement got better. As I've continued forward I can't say I've gotten much better, but I wasn't getting worse, so my neurologist has kept me on it for now

Hi @taa

I have been on Ivig for 9 years now. As I am stabilized, my doctor keeps me on them. I am happy to be funstional and not getting worse. I am glad you found this group but was also wondering if you had signed up at the foundation website: http://www.gbs-cidp.org

I have found a great group of friends and resources there which has been immensely helpful.

Have a great day.

Dana

Thanks Dana, I'll check it out. Glad to hear your doing well

Am SO GLAD to find others with CIDP. I have just recently been officially diagnosed with it -- BUT I have had it for over 13 years!!!! Because of its origin, in my case, toxic mold poisoning, the medical profession refused to do anything about it!!! ANYTHING!!! I went all over the country looking for medical help, some just did NOTHING after I got there, and Johns Hopkins even refused to see me. The response, directly on the phone, was "IF YOU INSIST ON TRYING TO CONNECT THIS TO MOLD, WE WILL NOT EVEN SEE YOU !!! " This is because of a big lawsuit in Texas, back in 2001, where the homeowners were awarded, first $32 million, later reduced to $11 million, because Stachybotrys behind the walls of the home had poisoned the family. The very high functioning corporate executive (40ish) deteriorated into severe dementia, unable to work and support the family. The son got major lung problems, etc.

I have long ago been unable to work, and pay my bills. I have had to move 8 times in these 13 years, and am now stuck in a "short-term" stay motel, with minimal accommodations, and have been since the beginning of the Pandemic. My car died, and I have no way to get anywhere.

My family has now mostly deserted me, and I am totally alone (divorced, no children). I need a support system, and PARTICULARLY, people who understand the truth of my illness. Thank you. I hope to hear from some of you. Lynne

Yes. I am taking IVIG subcutaneous, now once a week, because I'm in a flare.
Actually, together with the feet numbness and stiffness, I am experiencing numbness even in my mouth forearms and legs.
Does anybody with CIDP has these symptoms?