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Old 08-19-2010, 07:12 AM #1
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Default Worst case scenario.

Ok guys, I do hate to be negative and dwell on what I cant change but I feel the need to ask this question. For those of you who have not met me before I was diagnosed with neuropathy nearly a year ago. At the time my doc told me it would get worse over a period of months and years, as it was it got worse in weeks. It levelled out but has recently started getting worse again.

I want to pick you guys brains about what I can expect, I know it might seem maudlin but if you guys are willing to talk about it then I want to know how bad it can get from your experience. I want to know if any of you have had to give up work because it got so bad? I have heard stories of people being housebound it got so bad. Has this happened to any of you?

I know there will be arguments about not worrying myself and to try and be more optimistic. Thanks to you guys I have never felt more confident about my condition as you have been a wealth of knowledge in things to do to help it. I just want to get the full spectrum of the condition so I can get a balanced view.

Another reason I am asking you is that as I mentioned earlier I have read horror stories on other websites. Left unchecked these stories will make me worry more than true accounts from people who suffer with it daily. Thanks , Hemase.
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Old 08-19-2010, 07:50 AM #2
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Ive been Dx'd with PN for the past 12 years,
but with proper medications have been able
to run my own locksmith business- shop & road service,
with a little prudence on what I can, & cannot handle.
I do turn down some jobs that are too difficult, physically.
Shop service & key cutting, is the easiest for me to do.
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Old 08-19-2010, 08:58 AM #3
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I have pretty bad PN and some autoimmune junk going on.

I had to give up work. I am badly affected with FINE motor skills. I can't open a package, a jar, nothing. I can't get in IVs and stuff. I can't write very well with pencil or pen...I CAN type.

I do have a small organic farm...very small, and I can manage this, but, it is hard and I have a lot of pain and have to arrange my work so it gets done. Hubby helps me.

I can travel, but have to be careful to pace. I won't drive far alone, and only drive into big cities in an absolute emergency.

My legs are numb below the knee, but the numbness is more superficial....I can use them, I just have to be careful where I plant my feet. I use trekking poles when outside walking....or, lean on my grandson's stroller.

My hands are nasty and I am having surgery to try to fix the arthritis I also have. I have gotten to the end of my rope with disability and pain with the hands....so I am trying this fix with full knowledge it could backfire and get worse....

I have autonomic neuropathy and that is the MOST disabling part. If you can get away with not having the autonomic part, and can adapt to pain, you should do OK.

That said, I don't rule out being in a wheelchair at some time and I am fighting that with all I have. Once that happens your autonomic system functions very poorly. I live in a home with lots of stairs and that has probably been therapeutic...it forces me to walk up and down. I still even OPT to hang out laundry instead of use the dryer!

Try to stay on your feet. Try to stay active. Try to stay inspired. Try not to lose your sense of humor, you are going to need it. Try not to get to entangled with lots of meds. Try to eat well, even if it is baby food...(it's not all that bad.) Try to maintain social ties.

We all think about the worst case scenario....my advice....DON'T. Chances are, you will have suffering, some disability, but, you will prevail.
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Old 08-19-2010, 09:11 AM #4
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Quote:
Originally Posted by hemse View Post
Ok guys, I do hate to be negative and dwell on what I cant change but I feel the need to ask this question. For those of you who have not met me before I was diagnosed with neuropathy nearly a year ago. At the time my doc told me it would get worse over a period of months and years, as it was it got worse in weeks. It levelled out but has recently started getting worse again.

I want to pick you guys brains about what I can expect, I know it might seem maudlin but if you guys are willing to talk about it then I want to know how bad it can get from your experience. I want to know if any of you have had to give up work because it got so bad? I have heard stories of people being housebound it got so bad. Has this happened to any of you?

I know there will be arguments about not worrying myself and to try and be more optimistic. Thanks to you guys I have never felt more confident about my condition as you have been a wealth of knowledge in things to do to help it. I just want to get the full spectrum of the condition so I can get a balanced view.

Another reason I am asking you is that as I mentioned earlier I have read horror stories on other websites. Left unchecked these stories will make me worry more than true accounts from people who suffer with it daily. Thanks , Hemase.
I am confined to my bed 24/7 due to my neuropathy... and while I don't see how it can get much worse (except to have autonomic PN, which I am thankful I don't)... I'm told it will get worse... so we'll see in time what that means for me. I've only had PN since December and have been bedridden since May.
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My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-19-2010, 09:53 AM #5
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Quote:
Originally Posted by cyclelops View Post
eTry to eat well, even if it is baby food..

Baby food?
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Old 08-19-2010, 10:00 AM #6
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Thanks for the honesty guys, it really is appreciated. I guess I will have to enjoy myself now and not worry about the future.


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Worrying is like a rocking chair. Its something to do but wont get you anywhere.
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Old 08-19-2010, 10:12 AM #7
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Yes, baby food. It's good for us that suffer with gastroparesis and other nasty things caused by autonomic neuropathy.

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Old 08-19-2010, 12:05 PM #8
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Hemse,

You don't mention precisely how your neuropathy manifests itself. That might be helpful for us to know.

Have only had neuropathy a relatively short time (January 2010), and really don't know how to answer your concerns about worsening.

Mine is non-length dependent small fiber neuropathy affecting the skin (burning, fabric intolerance). The burning part has gotten significantly better though not gone. Haven't been able to wear my "old" wardrobe or pants because those things feel like burlap now. It's called allodynia when something causes discomfort that shouldn't - like a soft sweater now feeling like sandpaper on the skin.

Try not to look at the WCS because it might never happen. As cycleclops pointed out, try to stay involved, social, keep a sense of humor, etc. And as most of us, just do the best you can for as long as you can. That would include trying to keep up with physical activity although it might be the most difficult thing you've ever done.

Best wishes.
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Old 08-19-2010, 12:07 PM #9
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Yes baby food...ensure...boost.

PN affects the entire body in some of us.
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Old 08-19-2010, 10:42 PM #10
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It is hard to tell you what is ahead for you, no one really knows, I also have SFPN with autonomic symptoms. I have only had this for 2 years and also worry what is ahead for me. I was only dx this year. If reading what other people are going through is what is ahead for us then I guess we have to do as cyclopes said and keep positive. It helps talking to other people and NT is the best place for that.

Take care
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