Reply To: Newbie here: CIDP and Covid-19 question

July 24, 2022 at 11:41 am

I think the lack of consistent up to date discussion here, other than Jim, is due to several reasons.  Many have variants of CIDP, and with dx being so difficult and disease processes presenting differently in almost every case, as well as treatments varying depending on where one lives and what doctors are informed of newest treatments or willing to try them. I think the people that get a great result, have no reason to return here. Those of us that are or have been in a revolving door of different opinions of doctors, late diagnosis, minimal monitoring, no interdisciplinary care coordination, leads to apathy, depression, along with physical disabilities, and loss of quality of daily life activities.  I, as I have said, had late dx, was fortunate to finally get the Cidp confirmed after a year of hospitalizations, surgeries, rehab, before my first IVIG infusion  being treated successfully at a COE in NYC.  I went from a wheelchair to walking but it took 2 yrs.  Then my doc left clinical practice the same yr covid hit.  I have regressed since. No doc I have seen will attempt any newer tx, just vary the dose and frequency of ivig, which is not working anymore, as I wrote about here in March. No comments other than Jim and a person from overseas that suggested steroids, which my docs will not consider. I try to see new docs, usually have to wait 3 to 4 mos for appt., only to be told not to come after they review my record, stating they wont know or offer anything new. I tele med once with A doc at Cedars Sinai in LA. He suggested Ritux and to insist to my NYC doc they try it.   REALLY ?   So, ill sum up that I think there is lack of regular communication here as people become frustrated and overwhelmed with the entire situation they find themselves in, the health care industry, and the lack of research and new approved,  treatments for this disease and its variants. Now, with covid thrown on  top of it , I and many others, according to my ivig nurse, have exacerbated, yet I can not get docs to even acknowledge that as valid. I have had new electro studies post covid, showing exacerbation of disease and I am told, it might have worsened without covid and there is no data to support that.  People in this chain have dismissed the possibility too.  I DONT EVEN CARE the reason for the regression. I am just looking for help, but it reaches a point that one is so exhausted, Overwhelmed by entire situation, the phenomenon of learned helplessness kicks in, Google it. So thats my opinion why isn’t more exchanged here. People that have been great results have no reason to come  back here and those less fortunate find people like themselves, lost in this rip tide of  dx variants, treatments or lack of, and poor outcomes.  My symptoms began three mos after I had ankle fracture surgery. Prior to that, ran my own business, played golf, tennis, rode bike swam, ate healthy, had 2 dogs, traveled, took care of elderly parents, no health issues at all. Now, I can hardly walk into the kitchen, cant write. It’s not just the physical limitations, the constant discomfort is debilitating. The drugs that helped greatly with that, no longer touch the unyielding pins needles, pain, numbness,spasms, since covid.   Its 6 yrs since surgery and this nightmare began. Those close to me, friends for decades have slowly disappeared as they have seen me deteriorate.  I too check for updates daily…..crickets.  The new treatments link, Jim posted, god bless him, took me to 2 videos one can only view after a maze of sign ups for another platform.  My hands cant even do that.  Sorry for the venting,  just my opinion, and yes I know there are people dying of cancer I am told that on a regular basis as healthy people tell me how much worse it could be. I have science post graduate degree…I know that…it doesn’t help.