New Member Introductions Welcome to our community! Come in and introduce yourself to other members!!


advertisement
Reply
 
Thread Tools Display Modes
Old 05-06-2015, 04:57 PM #1
jdvp jdvp is offline
New Member
 
Join Date: May 2015
Posts: 3
8 yr Member
jdvp jdvp is offline
New Member
 
Join Date: May 2015
Posts: 3
8 yr Member
Default Serious neuropathy - docs say last option is MORPHINE

Hi Everyone,

My father-in-law lives in Italy and has had a serious neuropathy condition (non diabetic). His doctors have tried all the possible drugs and treatments, the last 2 being cannabis oil and just yesterday an electrical implant to block the pain in his feet, but nothing has provided him any relief.

We are trying to find out if there is a top-notch neuropathy clinic in the USA (Mayo clinic, Johns Hopkins or other top clinic) that might be able to help him.

He is extremely desperate from having pain 24 hours/day and now he's talking about going to Amsterdam where assisted suicide is legal in Europe, so he is truly at the end of his rope.

If anyone out there has ideas on where we should look for some help in the U.S. we would appreciate it so much. Thanks for any information you can share.

Jeff
jdvp is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BadgeBunny (05-11-2015), Darlene (05-07-2015), Lara (05-06-2015)

advertisement
Old 05-06-2015, 05:28 PM #2
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Default

Hi Jeff,
Welcome to NeuroTalk.

I'm very sorry that your Father is in so much pain. I don't live in the US so have no recommendations in that regard, however, I would suggest asking over on the neuropathy forum here ...

Peripheral Neuropathy Forum

SCS & Pain Pumps Forum

Chronic Pain Forum

I'm sure you'll find information and support here,
take care.
Lara is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BadgeBunny (05-11-2015), Darlene (05-07-2015), Enna70 (05-06-2015), Kitt (05-06-2015)
Old 05-06-2015, 05:33 PM #3
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,427
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,427
15 yr Member
Default

Welcome jdvp.
__________________
Kitt

--------------------------------------------------------------------------------------------------------

"It is what it is."
Kitt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Darlene (05-07-2015), Lara (05-06-2015)
Old 05-06-2015, 05:41 PM #4
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

I am so sorry to hear about your father in law's suffering. The Mayo Clinic focuses quite a bit of resources and research to neuropathy.

I hope he finds relief soon. Sending Healing Love,
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Darlene (05-07-2015), Enna70 (05-06-2015), Lara (05-06-2015)
Old 05-06-2015, 05:57 PM #5
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
Lightbulb

Dr. Chin at Cornell Weill clinic in New York City has worked well for some of our members. Mayo, less so.

https://weillcornell.org/rlchin

This is the testing protocol they use there:
http://www.questdiagnostics.com/test...ripheralNeurop

You can look thru that testing list and see what your father in law has had.
__________________
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:
Darlene (05-07-2015), Enna70 (05-06-2015), glenntaj (05-07-2015), Lara (05-06-2015)
Old 05-06-2015, 06:05 PM #6
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,427
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,427
15 yr Member
Default

The Mayo Clinic in Rochester, MN is very good.
__________________
Kitt

--------------------------------------------------------------------------------------------------------

"It is what it is."
Kitt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Darlene (05-07-2015), Enna70 (05-06-2015), Lara (05-06-2015)
Old 05-06-2015, 07:34 PM #7
EnglishDave's Avatar
EnglishDave EnglishDave is offline
Magnate
 
Join Date: Dec 2014
Location: Yorkshire, England
Posts: 2,098
8 yr Member
EnglishDave EnglishDave is offline
Magnate
EnglishDave's Avatar
 
Join Date: Dec 2014
Location: Yorkshire, England
Posts: 2,098
8 yr Member
Trig

Hi Jeff,

Firstly, I feel for your Father-in-Law. Chronic pain is not something that is easy for any of us to live with, and I have been suffering severely physically for 25 years and deteriorating to that point for longer.

Secondly, his mental state. Dutch Law for Physician Assisted Termination of Life is very strict. Here:

the patient's suffering is unbearable with no prospect of improvement
the patient's request for euthanasia must be voluntary and persist over time (the request cannot be granted when under the influence of others, psychological illness or drugs)

I doubt your FIL could find a Dr to assist on the grounds of Neuropathy on these first two points alone. We are talking about the pain of terminal cancer here. Believe me, I am 45 minutes from a ferry to Amsterdam - if it was easy…

What he needs IMO is Therapy and effective treatment for his obvious Depression. Does he have any treatment at all. As for all the treatments he has had for his physical condition, does this include Infusions? IVIG, Lidocaine, Ketamine? From what I've read on our Forums the latter two are more readily available this side of the Atlantic for some reason.

Keep searching, but address the mental health issues as a matter of urgency.

Dave.
__________________
You and I are yesterday's answers,
The earth of the past come to flesh,
Eroded by Time's rivers
To the shapes we now possess.

The Sage - Emerson, Lake & Palmer.
EnglishDave is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Darlene (05-07-2015), Enna70 (05-06-2015), Lara (05-06-2015)
Old 05-07-2015, 01:20 AM #8
jdvp jdvp is offline
New Member
 
Join Date: May 2015
Posts: 3
8 yr Member
jdvp jdvp is offline
New Member
 
Join Date: May 2015
Posts: 3
8 yr Member
Default

Quote:
Originally Posted by Kitt View Post
The Mayo Clinic in Rochester, MN is very good.
Thanks Kitt, I called them today and I was told they absolutely don't do any phone consultations. I'd hate to have my father-in-law go to Rochester and have them look at his history of treatment and tell him, "sorry, we can't do anything for you".

I don't understand why they wouldn't at least let us pay them to review the documentation of his treatment to-date and give some kind of indication about whether they thought it would be worthwhile to go to Rochester to be evaluated.

JDVP
jdvp is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (05-07-2015)
Old 05-07-2015, 05:51 AM #9
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,855
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,855
15 yr Member
Default When it come to neuropathy--

I would try the Cornell-Weill center for Peripheral Neuropathy in New York, or the Neuropathy Center at Massachusetts General in Boston, or Jacksonville Shands in Jacksonville Florida first (probably in that order).
Then perhaps the Johns Hopkins neurology department in Baltimore.

All would be shorter trips, as well.

In the midwest, my first choice would be the Jack Miller Center in Chicago, followed by the Washington University Neuromuscular Center in St.Louis.

All of these have the virtue of being dedicated to neuropathy research and treatment.
glenntaj is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (05-07-2015), mrsD (05-07-2015)
Old 05-07-2015, 09:01 AM #10
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,427
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,427
15 yr Member
Default

Quote:
Originally Posted by jdvp View Post
Thanks Kitt, I called them today and I was told they absolutely don't do any phone consultations. I'd hate to have my father-in-law go to Rochester and have them look at his history of treatment and tell him, "sorry, we can't do anything for you".

I don't understand why they wouldn't at least let us pay them to review the documentation of his treatment to-date and give some kind of indication about whether they thought it would be worthwhile to go to Rochester to be evaluated.

JDVP
I understand what you are saying. However, I would imagine that they have to see him as a patient and not just review his treatment to-date. I would think that would be true of any physician. Here is a site on Dr. Dyck. He is the Professor of Neurology. He and his team specialize in all kinds of it.

http://www.mayoclinic.org/biographie...d/bio-20053356

Hope you find an answer. In the U.S. News and World Reports the Mayo Clinic in Rochester, MN ranks #1 for neurology and neurosurgery.

http://www.mayoclinic.org/department...w/ovc-20117067

The Mayo Clinic in Rochester, Minnesota is one of the best.
__________________
Kitt

--------------------------------------------------------------------------------------------------------

"It is what it is."
Kitt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (05-07-2015)
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
Morphine? 72daywmn Medications & Treatments 20 04-12-2011 12:34 AM
RSD'ers... anyone try...morphine?? keep smilin Reflex Sympathetic Dystrophy (RSD and CRPS) 20 02-17-2010 04:14 AM
TR Morphine JOY210 Medications & Treatments 2 04-03-2008 04:39 PM
TR Morphine JOY210 New Member Introductions 2 09-15-2007 04:16 AM


All times are GMT -5. The time now is 07:38 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.