"You have 2 serious chronic diseases which are both terminal…"

Sorry Steve you are having a rough time. My uncle has ITP he had his spleen removed and he gets IVIG on a regular basis.

Sue

Steve

What a horrible time you hare having!
I, for one, would’nt think of asking when given a drug if it could cause something [I][B]worse[/B][/I] than what it is trying to help. One wonders if the doctors actually know these facts?
Hope you are able to get some rest soon!

Steve ~ I am so sorry for this rough spot in your life which has you so discouraged. Life can be hard! Please remember that diagnosis/predictions are just that. Any disease could be “terminal” for someone. Believe that you can be better/well. Set your head to prove them wrong! 10 years ago I was told that I would be dead in 5 years or less. Well, here I am! Still me in the flesh and blood 😀 You have had alot of medications that have been extremely hard on your body but you can build back up. A good nutrition plan can make an amazing difference. And spend lots of time with good music and funny, belly-laughing movies. And don’t forget lots of fresh air and purified water. You can do it! and this family will be here to cheer you on 🙂

Sorry you are having such a difficult time, Steve. This is the first time I ever heard that CIDP eventually is terminal. Neither my neurologist nor the oncologist/hemotologist told me that. I don’t know what to make of it.

IVIG and steroids have not helped me much and cytoxin or Rituxan are the last resorts left to me. The latter I cannot get because it’s not approved for CIDP. That leaves cytoxin. But your experience with the side effects of cytoxin adds another point to my argument that I never want to try it.

Hang in there.

Steve,

Sorry to hear about all the issues you have going on. CIDP being terminal would be a new one on me, unless you consider that it will always be present until you die. Best of luck to you with everything.

Jerimy

one could say that life itself is a terminal condition!

Steve, I’m sorry to read of your multiple problems.[QUOTE]”She considers CIDP eventually terminal” [/QUOTE] I have heard top world-wide experts on CIDP, such as Prof Richard Hughes of Guy’s/Kings, London, speak and there has never been any indication of CIDP being terminal. The same in the vast amount of published articles in books and neurological journals.
Why should she think so?
Norb’s signature and mine indicate CIDP related disorders. We have an extra amount of an antibody in our blood and this has been involved in us getting our CIDP related disorders. We have regular blood checks, annually in my case, in order to test whether our ‘score’ becomes too high. If so it would indicate the possible development of something like myeloma, potentially terminal.
At nearing 79 I feel to have had a good innings [a cricket phrase – meaning a satisfactory score!] already!
Best wishes to you Steve.:)

Steve,
I too am sorry to hear of your multiple problems. As far as I know C I D P is chronic, not fatal. I have just prayed for you, and will again.
Mary Ann

I would like to hear Doc David’s opinion on CIDP being terminal eventually.

I know CIDP can cause other health related issues because of the damage that has been done to the body and they might become terminal.

Please Doc, your opinions. I do remember you mentioning something on the old forums about CIDP and heart disease or heart failure, I am quite curious about this, because I feel that Frank’s heart was weakened by CIDP.

Doc was your kidney failure brought on by CIDP?

Am I way off base here David?

Brandy, no, CIDP is not a fatal disease. Yes I am in kidney failure and heart failure neither are related to CIDP. Rarely CIDP has caused respiratory paralysis like GBS this can be fatal, prolonged paralysis in bed can lead to pneumonia. CIDP itself is not fatal. DocDavid

Hi there,

CIDP is not terminal. However, what question is asked, and what answer a doctor gives it, can make for a lot of confusion. Ask your neuroligist this question. Does CIDP fall into that medical catogory of diseases, where each time there is an attack of said disease, it takes away something from the body? Like lifespan? The answer as I understand, does put CIDP into that catogory. My GBS, causing a more sedintary lifestyle, will indeed shorten my lifespan, because all the major organs won’t get the workout out, or excersice, thus getting lazy and shutting down prematurly. If not carefully understood, and words aren’t used in proper context, you could say GBS is terminal too. This is where a lot of those statements come from, that others have posted, where doctors don’t go that extra mile and spell out exactly where those kind of statements originate. That’s why I frustrate doctors, because I keep asking questions like that. Is it the disease that may be fatal, or the condition and the way said disease works, that may shorten lifespan? Then, you may hear, ok, it’s not fatal, but it does, or possably can, decrease lifespan. Big difference to me.

Thank you Doc David and Marc for your answers, as I had been thinking about
so many things about Frank’s health issues over the past few months since he passed away and have wondered if CIDP could have contributed to his heart getting weaker for the past 6 years.

I would like to make a comment about this too …..my doctor here in cyprus told me CIDP is not fatal , I am surprised by a doc in USA saying this ..which is wrong , my dad had ALS…else called MOTOR NEURO DESEASE ..now that is fatal .
It kinda scared me when I read the first thread but after reading doc David’s post and Marc it reashured me , after all I have CIDP for at least 30 years and I am still alive .

Hey Y’all,

Well, I have to post on this one too. Steve, don’t let the docs get you down with their comments. CIDP is not terminal.

Back in 2000, I saw Dr. Peter James Dyck (yes, his parents were cruel to name him thusly 😮 ) who was supposed to be the world renowned expert on neuropathy. He has since retired, but I’ll never forget my encounter with him.

I had been at the Mayo Clinic in Rochester, MN for almost a week when I was scheduled to meet with the Fellow, Dr. Burns. I was waiting in an exam room when this rather round, elderly gentleman walks in with the Fellow in tow. He had on a lime green oxford button down over a t-shirt that left the button down looking quite wrinkled. He wore green polyester pants held up with a brown belt. The pants and shirt were shades of green not normally worn together but since his white lab coat covered most everything, it wasn’t too terrible. His shoes were black and well worn. His collar button was not fastened and his brown tie (which clashed with everything he had on) was loosened about 2″. His white hair was thinning on the top and windblown, and his glasses reminded me of the glasses worn by the guys you see in old TV footage of the Kennedy and Johnson Space Center command posts; that brown tortoise shell horn rimmed kind. All this gave him a sort of mad-scientist look. Dr Dyck walked in and plopped down on a rolling stool at a desk where he flopped down my ever-thickening chart. After scanning the first few pages of test results, he briskly rolled across the floor spinning to face me. While taking off his glasses and folding his arms to rest on his belly, Dr Dyck said:
“Well you have a pretty good case of CIDP. We don’t know much about it other than CIDP won’t kill you. However, the treatments can kill you as you have obviously found out a few times during your therapeutic plasma exchange treatments these past 18 months. Now, are you still dead set on staying with TPE, or would you try a much less invasive treatment called IVIG?”

I have to chuckle every time I remember Dr. Dyck because he is my favorite kind of doctor. Brilliant to the point of eccentricity, but blunt and matter of fact. No sugar coating, no baffle them with BS. Just state the facts and get right to the point.

So, Steve, take what most doctors say with a grain of salt. Neurologists I have met either skipped or flunked the part of residency where they teach sympathy and bedside manner.

Oh Eric, I loved that story. You remembered all the details about him, that is so amazing.