advertisement
Reply
 
Thread Tools Display Modes
Old 04-07-2015, 12:55 PM #31
Tunaboy's Avatar
Tunaboy Tunaboy is offline
Member
 
Join Date: Mar 2015
Location: NYC
Posts: 149
8 yr Member
Tunaboy Tunaboy is offline
Member
Tunaboy's Avatar
 
Join Date: Mar 2015
Location: NYC
Posts: 149
8 yr Member
Default

MRI of brain and cervical spine came back normal. Next up is skin biopsy. If this shows up normal then is it all in my head?
Tunaboy is offline   Reply With QuoteReply With Quote

advertisement
Old 04-07-2015, 01:05 PM #32
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Wink

no, not necessarily.... chemical effects on the nerves does not show up until the nerves die back. "in your head" implies imaginary to many people. You are not imagining your sensations. If nothing shows up YET then you should be thankful that you may still reverse and heal some.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are 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.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
baba222 (04-07-2015), bluesfan (04-07-2015)
Old 04-07-2015, 09:15 PM #33
anon050715
Guest
 
Posts: n/a
anon050715
Guest
 
Posts: n/a
Default

Quote:
Originally Posted by Tunaboy View Post
MRI of brain and cervical spine came back normal. Next up is skin biopsy. If this shows up normal then is it all in my head?

Mine came back normal as well. Did you request the skin biopsy or did they already have it set up as part of your tests?
  Reply With QuoteReply With Quote
Old 04-07-2015, 09:31 PM #34
Tunaboy's Avatar
Tunaboy Tunaboy is offline
Member
 
Join Date: Mar 2015
Location: NYC
Posts: 149
8 yr Member
Tunaboy Tunaboy is offline
Member
Tunaboy's Avatar
 
Join Date: Mar 2015
Location: NYC
Posts: 149
8 yr Member
Default

Quote:
Originally Posted by UTGrad View Post
Mine came back normal as well. Did you request the skin biopsy or did they already have it set up as part of your tests?
The neuro recommended it to me as the next thing to test. I am also planning to see a rheumatologist to do more testing to get to the cause. I feel like this is autoimmune in nature or caused by a virus. I do remember having night sweats for a few nights when my symptoms first started. Also my lymph nodes in my neck are slightly swollen but haven't gotten any bigger.
Tunaboy is offline   Reply With QuoteReply With Quote
Old 03-02-2019, 09:40 PM #35
Tunaboy's Avatar
Tunaboy Tunaboy is offline
Member
 
Join Date: Mar 2015
Location: NYC
Posts: 149
8 yr Member
Tunaboy Tunaboy is offline
Member
Tunaboy's Avatar
 
Join Date: Mar 2015
Location: NYC
Posts: 149
8 yr Member
Default

Update:

Hey everyone,

It's been a while since i've been here. I promised myself I would come back and update everyone and hopefully help or reassure others going through the same thing. It was a real low point in my life but I've been living a normal life and everything is great! To make a long story short, I went to numerous doctors and tried so many treatments and kept searching for a cause. Never found out. Finally got a skin biopsy and it came back positive. I tried IVIG and didn't notice a thing. When my symptoms were first coming on, it started with my feet, then hands, and then it spread everywhere. I'd get random pinpricks, ice cube rubbing sensations, stabbing, and burning in random places including my back and head. My thighs always felt a constant burn, shoulders felt sunburned, and of course my feet. Limbs would fall asleep very fast, especially my hands during sleep. I opted not to start any pain meds because I didn't want to develop a tolerance. I only took prednisone for a few days and my symptoms got noticeably worse. I tried nortriptylene a few times and it didn't do much. Surprisingly, klonopin reduced the pain almost completely. After going to so many docs with no answers, I went to get tested for Lyme. It came back positive for igenex (which I believe is very common) but negative from stonybrook. I honestly don't think it was Lyme but I did take some antibiotics anyway for a few months (azithromycin and minocycline). Eventually I just decided to quit them for health reasons. My symptoms gradually got better and now I don't take anything and I only get slight burning in my feet once in a while. For overall health I do weight training 3 times a week, and take fish oil and vitamin D. I think the hardest part was mental and reading so many doom and gloom stories. But eventually you reach a new baseline and accept it. I honestly forget I even have it now and it hasn't stopped me from living a normal life at all. Been traveling the world and recently got a new job . Let me know if you have any questions and i'll make an effort to check back or just pm me. Stay positive!
Tunaboy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
beatle (03-27-2019), Lonestar (06-09-2019), P3000g (07-26-2019)
Old 06-10-2019, 09:55 PM #36
Lonestar Lonestar is offline
New Member
 
Join Date: Nov 2018
Location: Texas
Posts: 4
5 yr Member
Lonestar Lonestar is offline
New Member
 
Join Date: Nov 2018
Location: Texas
Posts: 4
5 yr Member
Default

Hey Tunaboy,

Glad to hear you've seen such an improvement in your symptoms!

Out of curiosity, how long did it take from the onset of your symptoms before you started to see improvement and over what period of time did things improve? Which symptoms were the first to calm down as things reversed?
Lonestar is offline   Reply With QuoteReply With Quote
Old 06-14-2019, 01:53 PM #37
Ragtop262 Ragtop262 is offline
Member
 
Join Date: Mar 2015
Location: Midwest
Posts: 381
8 yr Member
Ragtop262 Ragtop262 is offline
Member
 
Join Date: Mar 2015
Location: Midwest
Posts: 381
8 yr Member
Default

Hey Tunaboy, I recall your story from back when I first started on this journey. I haven't tried as many medications a you have - I was on heavy doses of Gabapentin for a while, but now on just a small dose to take the edge off. (And a number of supplements as well)

Much like you, things have calmed down, and I still feel it every day (especially the feet) - but it doesn't significantly impact my life at this point. It's just become the new normal.

I do like to stop back from time to time and check in. The forum has become pretty quiet since Mrs. D's unfortunate health problems. I was just thinking that this is about the 5 year anniversary of the start of my journey - so decided to stop in and see what was happening.
Ragtop262 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Streetlegal (06-15-2019)
Reply

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
I find this story about an 18 year old inspiring Natalie8 Multiple Sclerosis 4 03-19-2014 07:25 AM
Anyone find a successful solution to insomnia/sleep disturbances??? SpaceCadet Traumatic Brain Injury and Post Concussion Syndrome 14 05-29-2012 06:51 PM
Can't find my story. Doodle bug7 Pets & Wildlife 2 07-02-2009 04:29 PM
Social Security News: Powerful TV Story On Backlogs (VIDEO Story) Stitcher Parkinson's Disease 1 07-14-2008 10:55 AM


All times are GMT -5. The time now is 06:01 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

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.