Re: RE: Re: Connie

[Guest guest]

I don't know about mom but i love fast cars sorry i got mixed up on who had the

other pacer i get so aggravated with mysele and my memory

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- Re: Re: Connie

Mar Mommer is the one with cardiac sarc(if i remember correctly). not me...so

far.

Life may not always be the party we hoped for, but while we're here we might as

well dance!

> > We're having a little bit bigger problem right now that my neuro, and

> > electrophysiologist are trying to figure out. My heart nerves have decided

> > they will no longer obey my pacer except when they want too. I have a

> > setting of 76 bpm . I am 100% paced, it has been dropping below as far as

> > in the 40's and then the pacer goes wild, then it will go too fast. They

> > really cut up if I eat and don't have enough Lyrica on board. The neuro has

> > just recently told me I have sensory neuropathy, demylinating nerves, and is

> > going to do a nerve biopsy. My legs would feel like they were in hot grease,

> > I couldn't stand my clothes, or sheets, or anything to touch them, or they

> > would sting like I had them in a fire ant bed. (I use alot of Lidocaine

> > cream, plus meds). The only thing I can find that fits all the things the

> > doctor has told me and the symptoms I have been having in my legs, arms, and

> > heart is something called CIDP-Chronic Inflammatory Dimylenating

> > Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to

> > take (75 in the am, 150 at night) causes the heart to obey better than it

> > was. It still overrides, and has a weird misbeat. This isn't too cool if

> > it decides to ignore the Lyrica, my heart does not hold it's own. Before

> > the pacer I have a recorded heartrate of 1, and as high as 258.

> >

> > I now take only 10 mg of pred a day and Chorloquine.for my breathing. I

> > could not completely wean off the pred because my adrenal gland will not go

> > back to working. 10 mg is as low as I can go. I found an amazing

> > pulmonologist Dr Fulton. She has been great, ouhhh tried

> > methotrexate before chorloquine. I was one of the 1% that the skin came off

> > my face like a 2nd degree burn, I had to go to the ER and get solumedrol to

> > stop it from spreading any further. Looked like someone hit me in the face

> > with the flat end of a hot 2 egg cast iron frying pan. Needless to say,

> > going to work with my face like that was fun///not.

> >

> > I won't lie and say it doesn't concern me a bit, I have things to do. I am

> > ready to go, but not in a hurry. I have also had someone in a hospital

> > accidently turn my pacer off thinking my heart was strong enough to hold. I

> > instantaneously fell into the abyss. Scared the puddin out of her, soon as

> > she jerked the magnet off I came too instantly. You don't get any warning,

> > so if something happens I won't be able to call for help. I have a Great

> > God, and good doctors; and thankfully if it is CIDP there is a treatment

> > plan. I just hope they find it's name soon, that is half the battle.

> >

> > Don't mean to go on and on, but I can't talk very much to my family. One

> > of those 10 things that sarc teaches us.....my family and friends can be so

> > scared by a disease.

> >

> > I know I was gone for a while, but I have been sick alot since around the

> > end of February. No excuse I know, you all have been sick too. Thanks for

> > listening, I appreciate you all.......Connie

> >