CIDP, Autonomics, etc

General General CIDP Discussion
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So, I commented in Chirpy's discussion that I am stable, and I am, I guess. My hands go numb, and my right foot is partially numb, left less so but partially numb as well. I have been braving heels, though.

I am not adjusting very well to my "device" in my chest. I was looking back at my posts and I think that I told ya'll that I had an ICD implanted in my chest as the final outcome of my heart issue. Love it, NOT. It looks like a maybelline compact tucked on the left side under my collar bone. What makes it more prominent for me is the fact that I have no chest wall fat due to breast cancer. When they took my breasts, they take all tissue that they can get, so the device had no tissue to settle into. When they put these things in, they are sort of floating around a bit initially, and they find their place. Mine has had a nervous breakdown, it has no idea where to go. Sucks.

And, when I was preop, some ignorant nurse made a comment upon hearing me asking questions of the anesthesiologist about where the thing would be located. I was concerned about no chest wall tissue, wondered could it go behind the "thing that is now a breast" since it is made of fat with no breast matter in it. So, Florence Nightingnot, across the room yells, "you ain't that skinny". It haunts me. I have this vision, this instant replay constantly where I call her over, educate her about breast cancer and tissue removal, bust her nose, then proceed to surgery. But, I let the moment pass. What up? I did not let the moment pass in post surgery when they handed me the sucky out thing in response to me saying I was choking, and they told me to try to get the whatever out of my throat. For real? That plastic tube was hard, non bending, and about five inches long. I would have to have been deep throat, sorry for the indelicate reference, and the procedure I was recovering from was the EP study where they went into my heart through the veins in both thighs and my neck. I was not supposed to sit up or move. well, I sat my butt up and said to the nurse spooning ice into my mouth, "sorry for cussing, but, I cannot *&^%" breathe" while flipping the tables with tools on them over and screaming like a NJ housewife. They gave me vercid and ended it all.

So, I have an ICD that is going off frequently but staying in pace maker mode, has not gone to defib yet. That will be fun, it will be, in the drs words, "like a mule kicks me in the chest". yay!

But this Doc wants me at an autonomics clinic for a study. My body cannot control it's temp, I get hot as fire for no reason, like a lady of ill repute in church with a spotlight on her, I mean turn red, sweat all over and I have not had ovaries since 2002. This is not menop. My heart has lost it's mind, my gastro issues are lame and crazy, and I am screaming autonomics issues. I am really excited about this, I want to be dx if this is not CIDP. Please.

So, that is where I am now, just seems like I settle into a problem, healthwise, and another one comes along.

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Maam, I’m so sorry to hear about your problems. I’ve worked in the medical field for over 20 years, mostly in diagnostic imaging, Nuclear Medicine, Ultrasound, X-Ray, etc. People can be so thoughtless and I must admit that I’ve put my foot in my mouth quite a few times. I like to think that most people, especially healthcare personnel, are not intentionally heartless just thoughtless and lacking tact. I hope that you are surrounded by loving, compassionate family and friends. I’m very familiar with breast cancer and it’s
aftermath. In diagnostic imaging, I was responsible for staging the cancer and locating other organ metastases. I’ve just seen too many horrible problems with cancers, but unlike CIDP, at least I knew what I was looking for. With CIDP, it seems like it’s looking for a needle in a truckload of needles.
If i can help with any questions, i would be glad to. Unfortunately I don’t know much about this new stuff, like I knew everything about other health issues. God Bless You!
Glen

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Ty Glen, you are so nice. I have a daughter in nuc med so I kind f know what you do, that and all the battery of tests I have had. They first did a heart cath to rule out blockages and disease, none there. Then the EP study to determine what and where the problem was that was causing me to go into v tach, tried to ablate but could not. The spot was on the outside of my heart, in the top fold between the article chambers. Totally wrong place. He fired on it 58 times from the inside trying to burn through but could not. To ablate the right ventricle, your risk for death s 1 in 10,000, on the left side or outside the heart it is 1 in 1000. (I get the left and right confused) So, I had to go with the ICD. And, they have not approved one that is ok for MRI or Nuc med in the US yet. They have pace makers but not defibs. They are testing and using them in Europe. He chose a single lead for me so that he coule easily replace it should one come along. I have a brain tumor and the breast cancer issue, so they did one last MRI of both my chest and brain.