Please do not panic yet?!!!!!!

August 19, 2008 at 12:00 pm

CIDP/GBS/many neuropathies[autonomic] can affect the heart. It is rare tho, and doesn’t happen often. It could and likely is more a case of other concurrent medical issues or your medications. Web up ALL your meds under “[I]medication[I][/I][/I][/I], prescribing information” and look very closely at the side effects. Be very careful how you bring up this issue to your docs? Or they may put you on the tranquilizer route and not look any further. Ask your docs about the meds and possible connections to the CIDP, then ask what next? For me it was a peculiar vision issue that got my cardio/vascular systems checked out very, very thoroughly -all tests were negative. Tests included an EEG and EKG, Doppler sonograms of ankles [which were swollen w/edema and possibly a vascular issue], cardiac endoscope [just fine] and Holter monitor [just fine] and a dozen other tests I can’t recall offhand. This specialty neuro-opthamologist ultimately decided they might have been minor TIA’s and, since they’d abated, there was little to worry about….unless they acted up again. They haven’t yet thank goodness.
The hardest thing about all the CIDP aspects is the fear that new and different ‘things’ are real danger signs and they can truly be. Best to think clearly, calm yourself and work your way through it all. Ask youself: Did I get overtired today? Eat something I don’t normally do? Not do enough that I’ve normally done before? Etc. and sort of piece together any ‘different’ things that might precede this all. Don’t forget that once you get this stuff, you tend to move around and do less….then if you do more, it’ll hit you in one way or another. Do not ever expect a neuro or any other doc to hear you outline your problems and diagnose spot on from the start. Our bodies are complex organisms and just don’t cooperate that way. Nor do the docs. BUT a good doc will do more tests and check things out. A lazy doc won’t.
I admit that I go get those ‘heart poundings’ more often than I would like, but I can attribute it directly to one specific med I’m taking for another issue. I’m going to see that specialist very soon and discuss options about staying on it, versus not staying on it [for cancer]. You really have to be a detective of sorts about what is best for your own care and what you can and cannot do to help yourself deal with it all.
I hope this helps ease your fears a bit – if you persue it, and you should within reason, just prepare yourself for tests, tests and even more tests! Usually without any clear cut answers. It is the nature of our issues.