"You have 2 serious chronic diseases which are both terminal…"
AnonymousJuly 9, 2006 at 4:42 pm
(I’m still around but, the news could be better.)
That quote is from my hematologist. She considers CIDP eventually terminal and Myelodysplasia (MDS) can become deadly at any time, possibly evloving into Acute Myelogenous Leukemia (AML) in a difficult to treat form. Primary urgency now is Immune Thrombocytopenia (ITP), chronically low Platelet counts. Normal counts should be over 150, mine has been as low as 15. I was prescribed Decadron (steroids) to try to bring my counts WBC, RBC & Platelets, into the normal range. At higher doses counts looked okay, as I tapered down (from 40 to 12mg) my Platelets went from 61 to 26. “You failed steroids.” She said Friday, “I want to start another drug begining Monday to treat your ITP. You will have Rituxan infusions for the next 4 Mondays.” Now, I’ve been trying to get a trial of Rituxan for my CIDP for years without success because it is investigational/experimental for that purpose. Learning that it is the accepted chemotherapy for what may eventually bring about my demise really puts a high sheen on the turd that has become my life.
The chemo is one thing, surgery is another. I may have to lose my spleen as it tends to swell as it collects the platelets from my blood. There has also been speculation, as of last year, that my spleen may also be mulching white cells causing my chronically low WBC.
Last year I had a CMV infection which, was very difficult to diagnose. Not many people around here have had it so Drs don’t recognize it. I was confined to hospital in isolation for 5 weeks due to my suppressed immune system. Therapies included: blood transfusions, Gancyclovir, Cipro, IVIg and intravenous TPN feeding. From February to July I lost just under 50lbs due to anorexia, it was physically painful to eat, a very odd experience. Not to worry, the steroids have ensured that I regained every last pound.
I have never been this weak or this tired and it’s difficult to adequately describe how difficult it is to move. Sleep has become difficult possibly due to the steroids. I’ll be off them in a week so, hopefully rest will improve soon.
Almost forgot. CMV and MDS, why do I have them?
CMV: Cytomegalovirus is actually carried by most people, their healthy immune systems easily keep it in check. People with AIDS or those on anti-rejection drugs for immune suppression (I was on Cellcept) have a heightened susceptability to CMV and should be screened for the virus periodically (my Dr never screened me and I didn’t know to ask). My earliest symptom was a never ending bellyache that got much worse when I ate. Eventually I ended up with a case of diarhea that lasted for 2 months. Then I started bleeding.
MDS: Myelodysplastic Syndrome is a bone marrow disease where the cells in the marrow are abnormal resulting in an anemic condition. MDS doesn’t just happen, it’s caused. My bone marrow became damaged from the Cytoxan infusions I received in 2001 to treat my CIDP. I had never heard of MDS til recently and was never told that a disease worse than CIDP could result. Now you can’t say that.
AnonymousJuly 9, 2006 at 6:37 pm
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!
AnonymousJuly 10, 2006 at 10:21 am
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 🙂
AnonymousJuly 10, 2006 at 10:49 am
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.
AnonymousJuly 10, 2006 at 2:38 pm
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.:)
AnonymousJuly 11, 2006 at 11:44 am
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?
AnonymousJuly 12, 2006 at 3:26 am
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
AnonymousJuly 12, 2006 at 8:44 am
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.
AnonymousJuly 12, 2006 at 2:33 pm
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 .
AnonymousJuly 13, 2006 at 3:39 pm
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.
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