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Old 06-13-2018, 03:52 AM #1
Shak2388 Shak2388 is offline
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Default Something I have been thinking about

Hi everyone

Ok I think I have been on this forum alot lately and I think this will be the last post I will write for a while, I have not been officially diagnosed so I want to get as much information as I can.

Anyway so over the weekend I had alot of time to my self and I decided to search this forum particularly people with similar age and gender,something I noticed was alot people like me came on here in previous years discussed ther symptoms and commented on others some diagnosed others like me not and after a year or 2 left and haven't been back since.

I don't know if that means they got better(hoping they did) some haven't been on here for years,it's just something I want throw out ther and maybe others can chip in with opinions.

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Old 06-15-2018, 10:21 AM #2
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I think once the "We don't know" sinks in many just give up and deal with PN as it best they can. We all come here looking for answers, and the reality is there are few. For some of us(like me), it's a wake up call go out and enjoy this blue planet, so I hope that those that disappear are busy living.

Maybe when 'they' cure cancer, PN will get more press.........
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"Thanks for this!" says:
ger715 (06-19-2018)
Old 06-19-2018, 04:37 PM #3
Ragtop262 Ragtop262 is offline
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Payton & Dishrag gave some raw, honest answers. I don't think too many find "cures", but most find ways to deal with the symptoms they are experiencing. There are no certainties with any of this. It does seem like the slow progressive forms continue to progress, and the ones that come on quick and hard will often times moderate. I think Dishrag kind of hit it on the head. At some point you have done all you can to find a cure or a treatment, and just have to accept your new reality and go back to living your life the best you can.
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"Thanks for this!" says:
ger715 (06-19-2018), janieg (07-11-2018)
Old 07-11-2018, 08:10 AM #4
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I believe you guys are spot on.

I had similar issues in 2012, neuropathic that is. At that time it was my unstable thyroid. I had fasciculations going on and burning in legs. I was younger then and just moved on. I can't recall it anymore but after a while it just went away. I still had flares with my thyroid but it was clinically OK the endo's said.
Now, at the end, in 2018 my BFS Stuff is back and had some high period. But mostly, on let's say aboutbfs.com I've spoken with a lot of people. They just continue to live on. In most scenario's it flats out after a year or something.
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Old 07-11-2018, 09:40 PM #5
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Just not a lot to say at this point. Going on five years and have just learned to live with it.
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Old 07-16-2018, 08:24 AM #6
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Quote:
Originally Posted by janieg View Post
Just not a lot to say at this point. Going on five years and have just learned to live with it.
Yeah, same here.
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