Home Menu

Site Navigation



NeuroTalk Support Groups > > >

Still looking for a cause

Reply
Page 2 of 2 1 2
 
Thread Tools Display Modes
Old 08-23-2010, 02:40 PM #1
cyclelops's Avatar
cyclelops cyclelops is offline
Magnate
  
Join Date: May 2007
Posts: 2,049
15 yr Member
cyclelops cyclelops is offline
Magnate
cyclelops's Avatar
 
Join Date: May 2007
Posts: 2,049
15 yr Member
Default
It seems to me that a lot of people with SFN had spinal issues first.
__________________
Some days are not so good
.

.


Others not so bad:
.
cyclelops is offline   Reply With QuoteReply With Quote
Old 08-22-2010, 06:04 PM #2
Hermes Hermes is offline
Junior Member
  
Join Date: Aug 2010
Location: Washington DC Area
Posts: 75
10 yr Member
Hermes Hermes is offline
Junior Member
 
Join Date: Aug 2010
Location: Washington DC Area
Posts: 75
10 yr Member
Default Idopathic
Tom,

I've been struggling with neuropathy for 2 years now and they don't have a clue to what is causing. I went to Johns Hopkins in Jan of this year and they did MRIs, EMGs, more blood work than is reasonable, 13 vials of blood - I asked the nurse drawing the blood if she was going to leave me with any, & a skin biopsy. All normal. I was told all that can be done is to treat symptoms. I've been on 4 different meds and they work for a while and then it gets worse. I'm going to the JH pain treatment center the end of Sept to see what they can do. I share my experience just to let you know that I understand and share your frustration.
Hermes is offline   Reply With QuoteReply With Quote
Old 08-22-2010, 08:49 PM #3
smae's Avatar
smae smae is offline
Member
  
Join Date: Jul 2010
Posts: 458
10 yr Member
smae smae is offline
Member
smae's Avatar
 
Join Date: Jul 2010
Posts: 458
10 yr Member
Default
Quote:
Originally Posted by Hermes View Post
Tom,

I've been struggling with neuropathy for 2 years now and they don't have a clue to what is causing. I went to Johns Hopkins in Jan of this year and they did MRIs, EMGs, more blood work than is reasonable, 13 vials of blood - I asked the nurse drawing the blood if she was going to leave me with any, & a skin biopsy. All normal. I was told all that can be done is to treat symptoms. I've been on 4 different meds and they work for a while and then it gets worse. I'm going to the JH pain treatment center the end of Sept to see what they can do. I share my experience just to let you know that I understand and share your frustration.
Been there, done that! When I went to Mayo Clinic, they took 19 viles of blood. Jeepers!
__________________

.


♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

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.
smae is offline   Reply With QuoteReply With Quote
Old 08-23-2010, 05:50 PM #4
atltom atltom is offline
Junior Member
  
Join Date: May 2009
Location: Metro Atlanta Area
Posts: 42
15 yr Member
atltom atltom is offline
Junior Member
 
Join Date: May 2009
Location: Metro Atlanta Area
Posts: 42
15 yr Member
Default
Quote:
Originally Posted by Hermes View Post
Tom,

I've been struggling with neuropathy for 2 years now and they don't have a clue to what is causing. I went to Johns Hopkins in Jan of this year and they did MRIs, EMGs, more blood work than is reasonable, 13 vials of blood - I asked the nurse drawing the blood if she was going to leave me with any, & a skin biopsy. All normal. I was told all that can be done is to treat symptoms. I've been on 4 different meds and they work for a while and then it gets worse. I'm going to the JH pain treatment center the end of Sept to see what they can do. I share my experience just to let you know that I understand and share your frustration.
If you don't mind sharing, which doctor did you see at Hopkins? I saw Cornblath in Oct. of 09.
atltom is offline   Reply With QuoteReply With Quote
Old 08-23-2010, 08:24 PM #5
Hermes Hermes is offline
Junior Member
  
Join Date: Aug 2010
Location: Washington DC Area
Posts: 75
10 yr Member
Hermes Hermes is offline
Junior Member
 
Join Date: Aug 2010
Location: Washington DC Area
Posts: 75
10 yr Member
Default
I saw Scott Newsome
Hermes is offline   Reply With QuoteReply With Quote
Old 08-23-2010, 10:33 PM #6
janinco janinco is offline
Junior Member
  
Join Date: Aug 2010
Posts: 9
10 yr Member
janinco janinco is offline
Junior Member
 
Join Date: Aug 2010
Posts: 9
10 yr Member
Default
Tom,

My SFN started with a West Nile Virus infection. It messed up my immune system so much that I got several other viral infections over the next few years that my body is having trouble fighting including Epstein-Barr, Cytomegalovirus (strong association with neuropathy) and Parvo Virus.

I'm hoping my neurologist and immunologist will work together to get me on IVIG treatments because I know mine is primarily viral induced.

Jan
janinco is offline   Reply With QuoteReply With Quote
Reply
Page 2 of 2 1 2

« Previous Thread | Next Thread »
Thread Tools
Display Modes
Hybrid Mode Hybrid Mode

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


All times are GMT -5. The time now is 07:44 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

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.

Home