advertisement
Reply
 
Thread Tools Display Modes
Old 08-28-2015, 08:18 PM #1
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default Clinical Trials

Many current clinical trials target specific areas of the body (e.g., injections in the legs) but in my case with all over pn, I think I will need some type of infusion.

Effect Of Mesenchymal Stem Cells Transfusion on the Diabetic Peripheral Neuropathy Patients
https://clinicaltrials.gov/ct2/show/...m+cells&rank=1

But when?
beatle is offline   Reply With QuoteReply With Quote

advertisement
Old 08-29-2015, 12:22 PM #2
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default

Is anyone aware of any other transfusion based clinical trials other than the one above ^^ being conducted in Cairo, Egypt?
beatle is offline   Reply With QuoteReply With Quote
Old 08-29-2015, 02:17 PM #3
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

I'm not sure about 'clinical trials' going on right now, but what about IVIG...have you tried it? If you have a positive skin biopsy, then approval might be possible, even without a positive autoimmune condition.
en bloc is offline   Reply With QuoteReply With Quote
Old 08-29-2015, 03:27 PM #4
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default

I have not tried IVIg but my punch test was negative.
beatle is offline   Reply With QuoteReply With Quote
Old 08-29-2015, 04:51 PM #5
Patrick Winter Patrick Winter is offline
Member
 
Join Date: Jul 2015
Posts: 269
8 yr Member
Patrick Winter Patrick Winter is offline
Member
 
Join Date: Jul 2015
Posts: 269
8 yr Member
Default

Quote:
Originally Posted by en bloc View Post
I'm not sure about 'clinical trials' going on right now, but what about IVIG...have you tried it? If you have a positive skin biopsy, then approval might be possible, even without a positive autoimmune condition.
I have a positive skin biopsy, and one of the better insurance carriers around, IviG is still not easy to get approval for. Have to show all kinds of reasons for it.
__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

Patrick Winter is offline   Reply With QuoteReply With Quote
Old 08-29-2015, 04:53 PM #6
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
Default

Quote:
Originally Posted by beatle View Post
I have not tried IVIg but my punch test was negative.
Just really curious... How can our punch biopsies (me too) be negative with such intense wide spread nerve pain? I wonder if there's central nervous inflammation that is the cause. My recent CRP was 17 but no one seems too excited about it.
heb1212 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
beatle (08-30-2015)
Old 08-29-2015, 05:47 PM #7
madisongrrl's Avatar
madisongrrl madisongrrl is offline
Member
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
madisongrrl madisongrrl is offline
Member
madisongrrl's Avatar
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
Default

I get burning all over my body including my head. I have temperature loss up my arms. I may have temperature loss other places too, but at this point I don't want to know anymore. My punch biopsy was in my legs (2 holes) and was negative.

The punch biopsy could miss the places where the fibers are damaged. Or like in my case, they did not take the biopsy from the body part that likely has the most change of showing damage.
__________________
  • Gabapentin, Nortriptyline, & Low Dose Naltrexone
  • Methylcobalamin/Methylfolate, & Vitamin D3/K2
  • Phosphatidyl Choline, Phosphatidyl Serine & Probiotics
madisongrrl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
beatle (08-30-2015), pinkynose (08-30-2015)
Old 08-30-2015, 02:51 AM #8
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
8 yr Member
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
8 yr Member
Default

Quote:
Originally Posted by heb1212 View Post
Just really curious... How can our punch biopsies (me too) be negative with such intense wide spread nerve pain? I wonder if there's central nervous inflammation that is the cause. My recent CRP was 17 but no one seems too excited about it.
There are many kinds of SFN, autonomic and PHN. not all of them will show Nerve damage, or inflammation. it could be the part of your brain that processes pain, and other sensations. Or it could be a nerve that is not close to the biopsied area. SIGNals from nearby nerves can transmit to other nerves as pain signals without actually affecting the other nerves.

take tooth paiin,infection for example. Even though 1 tooth is infected the pain is transmitted to that nerve, and the dorsal root, but since the nerves in the head all come to one point, behind the ear, it can easily transmited to other nerves, so you can have pain in the ear, pain in the temple, both lower and upper jaw, and headaches.
Neuroproblem is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pinkynose (08-30-2015)
Old 08-30-2015, 12:38 PM #9
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default

Quote:
Originally Posted by heb1212 View Post
Just really curious... How can our punch biopsies (me too) be negative with such intense wide spread nerve pain? I wonder if there's central nervous inflammation that is the cause. My recent CRP was 17 but no one seems too excited about it.
I've had high CRP too.
beatle is offline   Reply With QuoteReply With Quote
Old 08-30-2015, 12:42 PM #10
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default

I thought they might have changed my dx after my negative skin punch biopsy result but it remains unchanged. Then again, what could they change it to?
beatle is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pinkynose (09-07-2015)
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
On Clinical Trials cyclelops Peripheral Neuropathy 4 11-12-2010 06:40 AM
Looking at clinical trials paula_w Parkinson's Disease Clinical Trials 1 05-27-2007 08:15 PM
Clinical trials - what do you think? jeanb Parkinson's Disease 5 05-17-2007 11:51 AM
Clinical Trials HubbyWithRSD Reflex Sympathetic Dystrophy (RSD and CRPS) 0 01-09-2007 09:38 AM
Clinical Trials jcherry Reflex Sympathetic Dystrophy (RSD and CRPS) 6 12-16-2006 10:13 AM


All times are GMT -5. The time now is 01:56 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.