advertisement
Reply
 
Thread Tools Display Modes
Old 01-12-2016, 01:28 PM #1
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
Default P. Neuropathy

MY Neurologist says I have Peripheral Neuropathy but does not no what is causing it, after going through a Nerve conduction test, MRI Test, and Cat Scan, all with no results is it really necessary for him to do a lumbar puncture? The symptoms are fairly bad all over my body.
terrence52 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
St George 2013 (01-12-2016)

advertisement
Old 01-12-2016, 03:01 PM #2
St George 2013 St George 2013 is offline
Member
 
Join Date: Sep 2013
Location: Georgia
Posts: 905
10 yr Member
St George 2013 St George 2013 is offline
Member
 
Join Date: Sep 2013
Location: Georgia
Posts: 905
10 yr Member
Default Hey terrence :)

How about asking for a skin punch biopsy first ? If your other tests are normal it might be the small fibers that are causing the problem.

The test is very easy......a couple of 3mm skin punches (they deaden the area first) and then they cover it up with a bandaid.

Maybe ask for that before going to the lumbar puncture ?

I had the same tests as you and they were all normal until the skin biopsy. And it showed I had small fiber neuropathy.

Just a suggestion. Please keep us posted.

Debi from Georgia
St George 2013 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
terrence52 (01-12-2016), zkrp01 (01-13-2016)
Old 01-12-2016, 03:10 PM #3
bluesfan bluesfan is offline
Member
 
Join Date: Jun 2014
Posts: 733
8 yr Member
bluesfan bluesfan is offline
Member
 
Join Date: Jun 2014
Posts: 733
8 yr Member
Default

Hi Terrence

Welcome to NT. Hopefully someone will be along soon to give you an accurate answer to your question.

Maybe your neurologist has a specific reason for wanting a lumbar puncture (ask him why he wants it done and what he expects it to show before you consent to the procedure). It's not unusual for people here with PN to have had a skin biopsy (a punch biopsy) done to look for small fiber neuropathy. Sometimes this gives a positive result and confirms the diagnosis - but also a negative result can be found but the person still has some form of neropathy.

There are more than 100 different types of neuropathy with just as many causes. Trying to identify the cause can require a lot of 'detective' work. I'm guessing you've been tested for Diabetes (this is the most common cause). Has your neurologist also checked your Vitamin B12 levels. If you can get copies of any blood tests your number should be above 400 pg/ml. The range still used by many doctors of a lower level of 200pg/ml being normal, is out of date.

There is lots of information on here about various types of PN. Take time to browse the PN forum - being informed will help you manage the condition.
I'll put in a couple of links here to websites which I've found useful:

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

http://www.clevelandclinicmeded.com/...hy/Default.htm

It sounds as though you have a neurologist who is being thorough and not dismissive of your condition - many here don't get such a good response. If they're empathetic and willing to work with you to manage your PN then you're in good hands. Doctors are often pushed for time with explaining things so it may be usedful to take notes and come here for help with the details.

All the best for progress. Let us know how you get on.
bluesfan is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
glenntaj (01-13-2016), kiwi33 (01-13-2016), mrsD (01-12-2016), Patrick Winter (01-13-2016), St George 2013 (01-12-2016), terrence52 (01-12-2016), zkrp01 (01-13-2016)
Old 01-12-2016, 05:00 PM #4
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
Default

Vitamin B12 is good and no diabetes.
terrence52 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
St George 2013 (01-13-2016)
Old 01-12-2016, 05:06 PM #5
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
Default Cold Damage

Could damage from the cold cause Neuropathy?
terrence52 is offline   Reply With QuoteReply With Quote
Old 01-13-2016, 07:39 AM #6
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

Have you been on any medications? This is probably the one thing Doctors won't look into (for obvious reasons) and there are many that can cause PN issues.
__________________
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


Last edited by Patrick Winter; 01-13-2016 at 07:55 AM.
Patrick Winter is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
St George 2013 (01-13-2016), terrence52 (01-13-2016)
Old 01-13-2016, 11:30 AM #7
rec60661 rec60661 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 35
8 yr Member
rec60661 rec60661 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 35
8 yr Member
Default Maybe double check b12?

I'm new to issues related to PN but was on two medications that we think led to b12 deficiency (daily dose of protonix for acid reflux for over 10 years and recently, was on daily dose at a level of 2000MG of Metformin for 18 months).

My b12 serum was over 800 but I had (and still have) significant neurological issues (PN in feet, ankles, lower legs and trembling, muscle twitches throughout body). Mine presents more like a polyneuropathy which also is indicative of b12 deficiency.

I recently read that low serum b12 is a lagging indicator of a deficiency and that being symptomatic of neuro damage is enough to warrant aggressive b12 therapy (1000 mg daily injections of methylcolobalamin for 2 to 3 weeks; then weekly injections).

First and foremost it's important to stop the progression of the damage, so we started the b12 therapy without doing any other testing. It could take a month to schedule and get further testing; if it's b12, we'll know in a couple of months. So far my symptoms have not worsened, but they also have not improved other than it seems I am walking better ... feeling a bit more sure-footed.

Once again - I am new to all of this so others who are better informed should feel free to correct or add to this information.
rec60661 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
St George 2013 (01-13-2016)
Old 01-13-2016, 11:35 AM #8
rec60661 rec60661 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 35
8 yr Member
rec60661 rec60661 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 35
8 yr Member
Default Patrick is SO right!

Quote:
Originally Posted by Patrick Winter View Post
Have you been on any medications? This is probably the one thing Doctors won't look into (for obvious reasons) and there are many that can cause PN issues.

I met with 3 different docs, none of whom even ASKED if I was on an acid reflux med or metformin! In fact, one of them was the doc who PRESCRIBED daily doses of Protonix for over ten years and never suggested that I cycle the med to prevent issues with absorption of b12 (or calcium or other important nutrients).
rec60661 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
St George 2013 (01-13-2016), zkrp01 (01-13-2016)
Old 01-13-2016, 11:42 AM #9
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

remember... you have to stop your B12 for several days before any testing, to get an accurate result. False elevations are useless to see where you are now after your supplementation.
__________________
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:
rec60661 (01-13-2016), St George 2013 (01-13-2016), zkrp01 (01-13-2016)
Old 01-13-2016, 05:22 PM #10
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
terrence52 terrence52 is offline
New Member
 
Join Date: Jan 2016
Posts: 5
8 yr Member
Default

Im on tacta for acid reflux, as well as endocet 1/2 tablet 4 times day as needed, and Coversyl for high blood pressure 8mg once day.plus Gabapentin which is utterly useless. Thats it for medications.
terrence52 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
St George 2013 (01-13-2016)
Reply

Tags
lumbar puncture, neuropathy


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
Post-Flu Vaccine Neuropathy (Possible Small Fiber Neuropathy) tarheel15 Peripheral Neuropathy 30 10-04-2019 05:44 PM
Health Advice for Peripheral Neuropathy & Drug Induced/ Toxic Neuropathy Jesse M Peripheral Neuropathy 78 08-01-2015 08:59 PM
Small Fiber Neuropathy Pain and Autonomic Neuropathy. Frustrated! Peripheral Neuropathy 7 10-07-2014 01:15 PM
paraneoplastic/SF-non lenght dependent neuropathy/demyelinating neuropathy pelztier86 Peripheral Neuropathy 16 05-21-2013 12:16 PM
Small Fiber Neuropathy (or Length-Dependent Neuropathy) plgerrard PN Tips, Resources, Supplements & Other Treatments 1 05-09-2010 06:56 AM


All times are GMT -5. The time now is 08:03 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.