advertisement
Reply
 
Thread Tools Display Modes
Old 08-20-2015, 04:39 PM #11
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Default

Quote:
Originally Posted by en bloc View Post
If you are looking to Dx autoimmune neuropathy, then I would definitely stay away from Mayo UNLESS your labs are clearly positive for autoimmune condition. Mayo is very picky about meeting criteria in regards to autoimmune conditions...they rarely Dx sero-negative autoimmune conditions.

Hopkins does have an extensive rheumatology dept....which you'll need as well as neurology.
But if they won't take you unless your autoimmunity is already diagnosed and you have neuropathy, what would be the point- it would be figured out already? What would they offer?
Healthgirl is offline   Reply With QuoteReply With Quote

advertisement
Old 08-20-2015, 06:14 PM #12
en bloc's Avatar
en bloc en bloc is offline
Senior Member
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
Default

They will listen to you and run a million tests, but if you don't fall within their pretty little box (criteria), then you won't get a solid Dx and they'll send you home saying you don't have AI disease and it must be in your head (seriously, some have been told this). They want criteria met...just how they operate.
en bloc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Susanne C. (08-21-2015)
Old 08-20-2015, 06:21 PM #13
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
Tongue

If you want to see how bad it can get at Mayo... read this thread.

http://neurotalk.psychcentral.com/sh...highlight=Mayo

A long time patient with MS had the most horrible experience there not too long ago.
__________________
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
Old 08-20-2015, 08:52 PM #14
en bloc's Avatar
en bloc en bloc is offline
Senior Member
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
Default

Sadly, she used that same phrase...little box!! And of course, it was all in her head like others I know that went there (myself included). That about sums it up!

Go to Hopkins or one of the others Glenn mentioned.
en bloc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
mrsD (08-21-2015)
Old 08-21-2015, 11:43 AM #15
antonina antonina is offline
Member
 
Join Date: Nov 2007
Location: manhattan, nyc
Posts: 272
15 yr Member
antonina antonina is offline
Member
 
Join Date: Nov 2007
Location: manhattan, nyc
Posts: 272
15 yr Member
Default i went to hopkins in 2010

i saw the head of the PN center. he repeated an emg, did a skin biopsy & performed bloodwork.

i felt that i got a more thorough workup there than i had ever had with the myriad neuros i consulted in nyc, including drs. latov & chin.

after the doc reviewed the test results, he concluded that my PN, altho initially caused by chemo, was exacerbated by a variety of concurrent health issues...untreated diabetes, etc. all of this information was never evaluated nor discussed by the docs in nyc.

in short, my hopkins trip was worthwhile & i would go again if i felt the need to.
antonina is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
en bloc (08-21-2015), Healthgirl (08-21-2015), mrsD (08-21-2015), Susanne C. (08-21-2015)
Reply


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
on my way to John Hopkins almost cait24 Myasthenia Gravis 4 06-13-2014 11:12 AM
trying to get in at John Hopkins cait24 Myasthenia Gravis 1 01-20-2013 03:01 PM
John Hopkins? dreambeliever128 Reflex Sympathetic Dystrophy (RSD and CRPS) 35 01-09-2013 12:49 AM
looking for host near John Hopkins harley Parkinson's Disease 1 08-04-2012 10:48 AM
John Hopkins? debbiehub Reflex Sympathetic Dystrophy (RSD and CRPS) 6 03-01-2008 11:30 PM


All times are GMT -5. The time now is 05:05 PM.

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.