anyone else with cidp from paraneoplastic antibodies??
November 21, 2010 at 10:43 am
just wondering how many others on this forum may have cidp from a paraneoplastic antibody? If so should I be overly concerned of a cancer? my neurologist does not seem that concerned of it–but every thing i read online suggests that it COULD be a prelude to a cancer….. on the bright side—maybe they will finally destroy the antobody causing the cidp if they are trying to cure a cancer. Lori
December 7, 2010 at 11:09 pm
yes i had a paraneoplastic panel and was positive for vgkc (potassium antibodies) which was then diagnosed as an immune disorder causing cidp?? not a lot of info out there on it–I do not currently have any cancer. I asked if i should be seeing an immunologist (?sp) dr that specilizes in immune system disorders instead of a neurologist but my primary dr didnt seem to think so. I thought so–since the immune system is the problem and the cidp is secondary to that–but i guess that would mean all of us with cidp should be thinking of that since its all immune related???? Lori
AnonymousDecember 8, 2010 at 7:18 pm
Cancer showed ‘up’ 18 months after CIDP onset. By then, I was diagnosed w/the CIDP.
The cancer I have/had can incubate up to 7-9 years before being detected. So no tests for that? No Proof of that.
I have to say that the cancer was detected after I’d been on IVIG for 6 months, and there had been studies done in ’04-05? [small test sample tho] showing that IVIG did ‘contain’ the cancer in some more managebly, and, in some cases reversed it.
Alas for me, that there were no cancer tests prior to or concurrent w/the CIDP antibodies and immune testings makes most speculation-just that. Likely possibly? Provable-no way.
That both were diagnosed rather early on and treated tho, has to me, at least… reduced the possible overall damages.
Both are autoimmune conditions/diseases, I’ve got a couple more and possibly even more to come? I’m truly afraid to go and find out…The latter ones, at least won’t kill me unless I don’t ‘manage’ myself.
If it were me in your situation? WAIT… No need to add more stressors than you already have! Honestly? I wouldn’t wish what all I have on my worst enemy. [Well, maybe, for only a day or two tho…]
Get treated and my heart is with you on this ONE!
December 9, 2010 at 2:56 pm
In my reading on this subject it has stated that the cidp is most usually diagnosed before any cancer–and usually by about 18 months!! These antibodies and cidp can also appear without any cancer too–so Im not really too stressed over the whole cancer part of it. the way i see it–is at least i was screened for the various cancers this could be related to and they all came up negative—if it wasnt for the cidp this never would have been suspected or looked for. So my thought is that if i do end up with some form of cancer,it will be caught early. anyway. Lori
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