July 31, 2022 at 11:30 am
See my 7/24 comment above. Dont know your husbands dx, how long he is treated. For me, as my strength and sensation returned, over 2 yrs, 3 treatments is nothing, and I don’t know his physical status, prior to ivig, but for me the discomfort of the neuropathy in my hands and feet worsened, because the ” healing” was not back to normal but with permanent damage, which can cause the continued neuropathy. Its a horribly debilitating ltd. life for me. Your husband should take some solace in having a caring wife for support. I am on my own and its a struggle every day. There are meds to help with neuropathy discomfort, your docs should know. All have side affects, and all have stopped working for me after covid. Perhaps if his ivig is in very early stages, its possible he can improve. Like I said I , don’t know his pre treatment condition, how long before his diagnosis, how frequently he is re evaluated etc. You inquiry gives very little clinical info. My comments above sum it up for my experience and with others I know. Some people never get results w ivig, some it just stops working for, others seem almost cured. All people all cases different, BUT EARLY DIAGNOSIS AND Early TREATMENT IS KEY.July 24, 2022 at 6:48 pm
Thank You. I understand your opinion, but IVIG does not clean the blood. I think you are maybe meaning plasmapheresis, that cleans blood. Ivig are antibodies that block the bad one on auto attacking the nerves. See link. Immuno suppressants like you and others are on, suppresses the entire immune system, making it more susceptible to infection. Its a trade off, Im willing to try. The IVIG did work for me.Stopped after I got covid.July 24, 2022 at 6:39 pm
Although IVIG has stopped working for me now post covid, when I was first diagnosed, I was in a wheelchair for almost a yr w late dx. It took 2 yrs for me to get out of the chair and walk. 40 days is nothing. Myelin grows at some ridiculous 1 mm a month or something. I never ” felt” it working after infusions. I got it every 2 weeks 50 gms after loading dose 5 consecutive days. After 6 mos. doc said I could start PT, based on vibration and other sensory and motor tests he did in office. Prior, there was no point as the nerves were so damaged the muscles we dead, I felt nothing. The motor came back with PT, after 2 yrs, every 2 weeks infusions. However, I never got back to normal, and as sensation came back too, it came back in a painful way, due to the nerve damage because my dx was too late. The key is quick diagnosis prior to real muscle weakness, constant neuropathy. I know a person who got dx the same week he first felt tingling in feet. Immediate Ivig on a regular basis, 2 times a month for 3 yrs, now every 6 weeks and he is normal. 40 days is nothing if you have severe demyelination.July 24, 2022 at 5:22 pm
Thank you for the reply. I know of most all of those treatments. I appreciate your concern and taking the time to suggest these. You wrote me in the spring under topic ” Help IVIG not working post covid 19 ” in Main forum.
As I tried to express above in my reply to David, cant get a Doc here to consider anything but IvIg as main tx and rx drugs for symptoms like lyrica, gaba, cymbalta, effexor, nortryptaline, alpha lipoic acid, B vitamins, medical mmj, PT, ….THEY JUST WONT DO IT ! Maybe medical legal fears, Age, indifference, the beating the NYC hospitals took during covid. The CIDP MD heavy hitters, that were younger and more pt. focused, that were mine and wonderful, left practicing for biotech pharma in 2020.What has happened since is above in detail, summary, I cant get a new doc to take me after they get voluminous record. I am considering making an appt with new ref., not sending record, just electro reports, explain situation, and if IVIG is all they will consider, I wont even send record. They all know each other and dont want to agree or disagree with a colleague. SMH
Thank you again. You are a wonderful kind person. I wish I was in LA, I telemed w Richard Lewis Cedars Sinai. He had many Ideas. Knows my doc, said to demand he consider alternatives at next appt. Did not go well. Tried to get appt with different doc here Lewis suggested. He is not taking new pts. Refd me to another, did not want the case. Chasing my tail.July 24, 2022 at 2:13 pm
The sorting is working in chron order of topics now. Thank you
Was wondering if there is a way to find a specific person by name,
or post I posted. I sometimes forget the topic that was in thread
of a post I may want to re read, or re visit a link that was in a thread ?
I don’t know if I am making my question clear. I have posted under
maybe 2 topics to START. I have had follow up questions or comments
to others posts. Can I fond them again by sorting using my account name ?
The foundation should pay you. You know more than most of tech support
and treatments etc. I don’t know how you stay so motivated, knowledgable
and patient with helping others. I have followed your story. I don’t know where
you get the tenacity. Perhaps you have amazing emotional, social, familial,
and medical support.
PammyJuly 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.July 23, 2022 at 4:19 pm
Your so right. I didn’t notice the date. Thank you for the input.
So desperate for some new treatment.July 23, 2022 at 10:20 am
I found this Jim. Of course not gov clinical trial. I also found discussions on Mayo Clinic forum. Lastly, although my original dx at nyc center of excellence, on more than one electro studies was Cidp as described almost verbatim in this article, but post covid, what is described here as sfn seems to be manifesting now ie.thinning less elastic dry skin in hands lower arms. Do not experience ischemic pain, cold extremities. Tightness in ankles,jts, hands feel like tight glove, numbness, loss of balance worsening. Docs here just play w ivig dose, frequency, wont consider other drugs ie. ritux, or will they acknowledge covid may have affected condition. ” No clinical data to support that “. Of course not, no studies have been done !July 22, 2022 at 5:27 pm
More likely, the Covid affected the Cidp than visa versa.
Covid elicits a never seen before inflammatory response, immune response,
which is the cause of resulting deadly symptom response, since CIDP is an
inflammatory disease to begin with, AUTOIMMUNE MEDIATED.
Just my opinion. I had very mild original covid while a CIDP pt. 4 yrs.
I have read several posts that the milder covid cases, have the worst long covid
results. WHO KNOWS ?July 22, 2022 at 4:28 pm
I have contacted you before since my exacerbation of CIDP post covid.
I saw on web cold laser therapy. I searched here , found nothing.
Are you familiar w this being posted here or anywhere for CIDP neuropathy ?
Hope you are doing well….you amaze me.
PammyJuly 22, 2022 at 4:24 pm
Have Cidp. As manageable w ivig for 2 yrs, every 2weeks, then every 3 weeks.
April 202 got covid. Not a terrible case, before vaccines. CIDP has regressed
terribly since. I wrote here about it…nobody replied w similar experience.
Have tried different doses and intervals, nothing has turned it around. Docs
say no evidence covid exacerbates CIDP ! Of course there is no evidence, nobody has done a study on it. Depressed, debilitated and disgusted. See my prior posts if you
can find them, I don’t know how to work this sight well at all.
Thank YouMay 5, 2022 at 9:07 pm
Wish I had some positive advice. My situation is still as above.
I don’t have GBS, never did, have CIDP, don’t know where that came from.
For balance, if you go to PT facility, they have a board with a sort of
ball attached to bottom of it, and if you balance yourself on top of that board
positioned between parallel walking bars to prevent fall, when you get back onto
stable floor, balance is better..,.the instability while on the board, retrains the
What do you use for comfortable socks or sneakers or slippers.
Bootie indoor outdoor slippers been using are wearing out out.
My toes are hammering from foot muscle imbalances, so most
footwear is intolerable.
Thank YouMarch 23, 2022 at 4:38 pm
I, like you want to see most recent posts. Also, I have CIDP, when i post question, say on my foot pain , or socks or braces, doo i do it under main forum, new topic or CIDP ? I come across some interesting info, occasionally, looking through the search topics bar, but usually very old, maybe more than 10 yrs. Its frustrating and hard to believe in this tech works these subjects cant be sorted by disease, topic, date ? Am I expecting too much ? I cant even fond my own posts ?
PammyMarch 14, 2022 at 8:49 pm
You are better person than I. What type of afo do you have ? Do they go in your shoe ? I don’t have foot drop, horrible sensation in both feet so cant feel floor to get brain feedback for balance. My feet hurt so much, sox hurt, any shoe excruciating without AFO. I need more balance or I need walker. Im mid fifties. Was healthy, athletic, health professional, 25 yrs. Broke ankle, had surgery, 3 months later in wheelchair cant feel hands….so Im not grateful, I feel my life was stolen from me. Pain 24/7, cant drive, work, play sports, have my dogs, cook for myself, vacation, walk on beach, ride a bike. I was much more functional before I got covid, Major setback. I wrote new post yesterday in general forum on this regression. What treatments do you get ?
Thank YouMarch 13, 2022 at 12:47 am
Thank you, for contacts Im on long island border of NYC, anyone in long island like zip 11030 ? Ill check queens too. Too kind. Freezing tonight !