Connie

[Guest guest]

Connie,

I am sending you big hugs for tomorrow!! I wish you the best & look

forward to seeing how it all goes for you!! Update us when you feel up

to it!

Best Wishes,

[Guest guest]

Yep, I believe you're right. And isn't she the one who loves fast cars? M., weigh in here & let us know if we are right!

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mary_s777@...Date: Wed, 8 Sep 2010 23:16:16 -0700Subject: 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> >