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Old 04-22-2015, 09:22 AM #1
JoannaP79 JoannaP79 is offline
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Default Work and dealing with PN

Hi all, I feel that my SFN /PN is spreading as time goes on. It is now within my mouth, lips, tongue and my nose and sometimes in the trunk of my body. As this is spreading and feeling worse as time goes on I have alot of worries about the future. I have been signed off from a demanding stressful job since January and can no longer return to this type of work so will have no real income soon. How do you all cope work wise? Do any of you manage to fit some type of work around the PN, even those who have it really bad? I feel insecure about living on solely benefits as know many people who are in a real bad way who have had them taken away. Also the understanding of SFN/PN and its impact on daily living seems very limited so I doubt I will fare too well if I tried to claim anything.

I think this has probably been asked a few times already but is there really any hope for nerve regeneration in the relatively near future? I was told about ARA290 but couldn't find any studies ref efficacy for regeneration. It does appear to be promising for pain relief. I am a relatively young single parent to a toddler so I do worry about the future and how I will support my son and I hence all the desperate questions! :-)
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Old 04-22-2015, 10:22 AM #2
canagirl canagirl is offline
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I worry too. right now I have to drag myself to work because being at home provides zero distraction and I can't cope with that. Work provides at least a tiny distraction. I worry about coping financially if it comes to the point that I can't go to work anymore. I'd like to hear how some veterans do...
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Old 04-22-2015, 11:18 AM #3
Ragtop262 Ragtop262 is offline
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Same worries here. My job requires a lot of walking, climbing ladders and stairs, etc. I'm only a few months into this, and my symptoms aren't all that bad overall. But there are days that my feet are screaming and feel like I can't take another step. (I can do the daily activities of life just fine, but the days when I have a lot of walking and climbing at work are getting tough.)

I do have a very good short/long term disability insurance policy through work, so I would be financially OK if I become "disabled". But I'm not sure what threshold they use to determine "disability".

I know in the US, the social security threshold for "disability" is very high, and it would be very difficult for SFN to meet that threshold. But the definition of "disability" within a disability insurance policy is different. (I think mine just says you are disabled if you are unable to perform all the activities required of your job.)

I don't mean to "highjack" Joanna's post, but along with any tips for coping with work in general, please let me know what your experiences may have been regarding if/when you were able to get disability benefits (either through social security, or through a disability insurance policy).
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Old 04-22-2015, 03:22 PM #4
Coriny Coriny is offline
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In that boat,too!! Waiting on my long term disability after exhausting my short term. I will not fully recover, ever! I could get worse!! I am calling a lawyer after my physical therapy to determine my rights.
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Old 04-22-2015, 04:47 PM #5
KnowNothingJon KnowNothingJon is offline
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I have a desk job and have been struggling for years. With meds and taking a few hours off here and there, the whole day yonder, and so on, I was able to get by with a small group of supporters.

I finally requested my neurologist to fill out FMLA paperwork on my behalf. Despite every best effort, I have diagnosed diabetic polyneuropathy and my diet has been vegan for 16 months- lost 1/4 of my mass, 5.8 AiC, everything is still progressing.

For those on their feet or no ability to take time off in order to continue my admiration is boundless.

There is an ebb and flow. I think the shingles set me back. I can gain back what stamina was lost (I hope) but a slow road is wisest for me.

Best of luck,

Jon
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Old 04-23-2015, 07:09 AM #6
jurgen975 jurgen975 is offline
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Quote:
Originally Posted by JoannaP79 View Post
Hi all, I feel that my SFN /PN is spreading as time goes on. It is now within my mouth, lips, tongue and my nose and )
There has been a couple of articles regarding stemcell therapy that had a indication that it could help people with PN.

Also the university of michigan is doing a third phase clinical trail with a genetic growth hormone.

And in San Diego there is a professor how is trying to find a cure however i think it will take a long time for something will be available.
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