Go Back   NeuroTalk Support Groups > >

Something I have been thinking about

Reply
 
Thread Tools Display Modes
Old 06-13-2018, 04:52 AM   #1
Shak2388
Junior Member
 
Join Date: Feb 2018
Posts: 46
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.

Sent from my SM-G935F using Tapatalk
Shak2388 is offline   Reply With Quote
Old 06-13-2018, 02:03 PM   #2
Payton
Junior Member
 
Payton's Avatar
 
Join Date: Jan 2018
Posts: 23
Default

Quote:
Originally Posted by Shak2388 View Post
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.

Sent from my SM-G935F using Tapatalk
i havent either and just randomly came here it seems safe here the damage and stuff is apparent to me but like a lot of symptoms whether its worsening insomnia, sensations/loss, autonomic neuropathy, double vision and visual disturbances cognitive issues etc a lot of this even attacks and myoclonus can be invisible symptoms goes past doctors especially when its hard to articulate to them so they dont take me serious, its always the same outcome, just disregard and point to psychiatry but they will take me serious i guess when more demential or cant function at all or death brain autopsy may not explain everything but i know it will confirm. i hate some of these doctors how they have laughed in my face acted rude or just disregarded , given false diagnosis im no doctor nothing close but all these years dealing with these complex problems and crying out to them and to be mocked, swiped away is wrong but i gave up on them a long time ago. i can understand people in general or family who dont know this struggle and will talk **** but these are professionals


hopefully you find specialist or doctor who will work with you and help your situation / condition
Payton is offline   Reply With Quote
Old 06-13-2018, 04:49 PM   #3
Shak2388
Junior Member
 
Join Date: Feb 2018
Posts: 46
Default

Quote:
Originally Posted by Payton View Post
i havent either and just randomly came here it seems safe here the damage and stuff is apparent to me but like a lot of symptoms whether its worsening insomnia, sensations/loss, autonomic neuropathy, double vision and visual disturbances cognitive issues etc a lot of this even attacks and myoclonus can be invisible symptoms goes past doctors especially when its hard to articulate to them so they dont take me serious, its always the same outcome, just disregard and point to psychiatry but they will take me serious i guess when more demential or cant function at all or death brain autopsy may not explain everything but i know it will confirm. i hate some of these doctors how they have laughed in my face acted rude or just disregarded , given false diagnosis im no doctor nothing close but all these years dealing with these complex problems and crying out to them and to be mocked, swiped away is wrong but i gave up on them a long time ago. i can understand people in general or family who dont know this struggle and will talk **** but these are professionals


hopefully you find specialist or doctor who will work with you and help your situation / condition

Thanks for the reply
Shak2388 is offline   Reply With Quote
Old 06-15-2018, 11:21 AM   #4
DishRag
Junior Member
 
Join Date: May 2018
Location: Tennessee
Posts: 54
Default

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.........
DishRag is offline   Reply With Quote
"Thanks for this!" says:
ger715 (06-20-2018)
Old 06-19-2018, 05:37 PM   #5
Ragtop262
Member
 
Join Date: Mar 2015
Location: Midwest
Posts: 370
My Mood: Something I have been thinking about
Default

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.
Ragtop262 is offline   Reply With Quote
"Thanks for this!" says:
ger715 (06-20-2018), janieg (07-11-2018)
Old 07-11-2018, 09:10 AM   #6
Sicabre
Junior Member
 
Join Date: Jul 2018
Posts: 7
Default

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.
Sicabre is offline   Reply With Quote
Old 07-11-2018, 10:40 PM   #7
janieg
Member
 
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 737
Default

Just not a lot to say at this point. Going on five years and have just learned to live with it.
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, high LDL.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate, NAD+
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
janieg is offline   Reply With Quote
Old 07-16-2018, 09:24 AM   #8
Sicabre
Junior Member
 
Join Date: Jul 2018
Posts: 7
Default

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.
Sicabre is offline   Reply With Quote
Reply

Tags
alot, diagnosed, forum, people, ther

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Thinking of You RSD ME Reflex Sympathetic Dystrophy (RSD and CRPS) 3 12-02-2013 05:14 PM
Thinking of everyone suzyqz_2007 The Stumble Inn 3 10-02-2008 04:27 PM
Thinking Of You Jaime_S Creative Corner 3 02-06-2008 10:45 AM


All times are GMT -5. The time now is 07:29 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central • Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2018 DragonByte Technologies Ltd.

All posts copyright their original authors • Community Guidelines • Terms of Use • Privacy Policy