There was one person on another website whose husband posted there about her and she died of autonomic PN. Her lungs gave out. I don't want to dwell on death here because I don't think it happens much either, don't really know. But Nervous asked about it, she wants to know, she's scared and I posted about it mainly to say that I don't think it happens much from PN! And that's great!! That's the good news! The bad news is that PN is annoying....and we already know that....and the hard thing to do is accept it Nervous and you will come to do that in time....as others have suggested.

Well, I don't want to speculate what will kill me. I have had a near death experience, trauma in my 30's and I am very lucky to have survived and watched my children grow up. I am thankful for every morning. (I am probably a bit less thankful at the end of each day, pain and exhaustion to get to me and I get crabby).

I would think tho, that the autonomic instability of my body won't be controlled and something will give out. Either an arrhythmia, catastrophic blood pressure event, stroke, kidney failure, or some dumb fall. Fact is, we are all mortal. I would love to die a contented grandmother at 96, but, that is unlikely. Frankly, a bit of denial is not a bad thing. I just try not to think about it, but I have my affairs in order.

I was utterly shocked to find I had PN. That was never a disease even on my radar. Neither was a near fatal car accident.....so, you never know what life has in store for you.

I figure I have lived well, I have no reason to believe I won't die the same way. Hopefully with dignity and with my loved ones there. I don't want to leave this planet by a longshot, but, when my time comes, it comes. Thinking about it gets me more morose....The human condition is dealing with mortality....the existential crisis.....keeping busy and having goals helps me overlook the inevitable exit awaiting me, and my loved ones.

Feeling needed is a compelling reason to stay on the planet....right now, I feel that overwhelmingly. (Some days, I wish I was a bit less needed....I miss my alone time!!! I never thought I would say that!)

I very recently had a go-around with my PCP about that.
It seems that in my file she noted that in the past, I had been 'depressed'.
I found out about it when I went into a stop smoking program that she referred me to. They weren't going to let me have Chantix because of the volume of intense literature that says that a possible side effect is suicide for patients with a history of 'depression'.
I've been thru the initial, frantic and upset period when fist Dx'd with PN, a son paralyzed, my business in jeopardy, (forced to relocate my business, or go out of business) personal problems of a general nature, etc, and dealing with PN on a daily basis-in the last 12 years (& have had PN for at least 5 or more ...before the Dx).
We had a discussion, & agreed....... to disagree.
She agreed with me when I said "stress-yes!, anxiety-yes!, upset-yes!"
But when I said "but...depressed-never!" she & I argued a bit, and she noted in my file that I contradicted her ........ bottom line - she finally Rx'd Chantix for my no-smoking program. I start it next Mon with a quit date of Aug 1st.
Some mild depression can be expected when we are faced with the initial Dx of PN, and along the way we have set-backs, and 'low' and 'down' periods.
In the beginning, finding the right treatment and meds can be a daunting & frustrating task- but once you've found the right combination, and meds 'cocktails', you can get on with your life.
But don't let them label you with 'depression'.
If you are OK on a daily basis and keep fighting this PN, try to live as normally as possible, and have a productive life- you cannot be 'depressed'.
But you can have..... 'moments'.

That's ridiculous, and maddening! If she thought you were depressed, why didn't she talk to you about it before and suggest some kind of treatment? And I think that with all you've had to deal with, you've mostly sounded to me like you're managing pretty well. We'd probably all scream if we only knew all the stuff that doctors have written about us.

Good luck with quitting...if I could do it, surely you can!

Bob, I could not agree with you more. There are natural perfectly normal reactions to bad things that happen.

What...are we supposed to be happy we got this freaking disease??

Same with the troops coming home and PTSD....I see some of this as normal reactions to abnormal situations. It is perfectly normal that my son will duck for cover the rest of his life. The fourth of July was misery for him. He spent a year of his life ducking for cover to save his life.....he got hit once.....so...it is now ingrained. It is what it is.

I had a similar situation with my rheumatologist in a recent visit....I am not seeing her again....she does nothing for me anyway. I wonder how many depression discussions take place after a drug rep visits.

JoanB wrote " We'd probably all scream if we only knew all the stuff that doctors have written about us."

Joan im sure you are right on the money with this.

this post is not a reference to Bob's post in as much as he dealt with the GP about putting that he was depressed in his medical record and his record was amended to reflect his objection. for others if you who feel that there is or may be an inaccuracy in your medical record you have the right under HIPPA to review your file and to correct the inaccuracy.

I know that this may sound like a crazy person is sending this to you, but my own MD recommends this, i.e, place an unwrapped bar of soap between your bottom sheet and your mattress pad. If you feel a foot cramp or a leg cramp coming on (or it's going full blast), slap your foot or leg on the soap. My some miracle, the pain will go away. I have recommended this to various people over the past three years and only one said it didn't work. She was positive it wouldn't before she tried it which may tell you something. One good friend got tired of being awakened by her husband three or four nights a week when he'd get foot/leg cramps. She put the soap in their bed and didn't say a work until about a month later he mentioned that the foot/leg cramps seemed to have gone away. He never would have believed it, but how is a total convert. Please try it. What can it hurt. Good luck!!!

Hi GolfPat and welcome

you may be interested in this 2008 thread related to the soap "treatment"
http://neurotalk.psychcentral.com/sh...ad.php?t=54740

I tried the soap....no luck. I make soap, so honestly, I can't figure out what would be in soap that would make cramps or neuropathy stop....lye?? Maybe if you hit me over the head hard enough with a ten pound bar of soap and then tucked it in between the sheets???

it seems to only be ivory soap that works...I dont have PN but used to get foot/leg and back/neck aches at night and since Mel posted about that, I have had ivory at the head and foot of my bed and never have night or morning aches anymore!

there was a follow up thread on it too
http://neurotalk.psychcentral.com/sh...ad.php?t=67745