advertisement
Reply
 
Thread Tools Display Modes
Old 07-13-2016, 11:00 AM #21
dogwalker dogwalker is offline
Member
 
Join Date: Jul 2013
Location: Vancouver, WA
Posts: 103
10 yr Member
dogwalker dogwalker is offline
Member
 
Join Date: Jul 2013
Location: Vancouver, WA
Posts: 103
10 yr Member
Default

Quote:
Originally Posted by kiwi33 View Post
That is strange - do you have any non-immunological clinical signs of SLE?
No clinical signs other than PN. My rheumie can't say that I don't have lupus, but doesn't want to say that I do unless I develop skin or joint, etc symptoms. Thanks!
dogwalker is offline   Reply With QuoteReply With Quote

advertisement
Old 07-13-2016, 01:45 PM #22
mskari85 mskari85 is offline
Junior Member
 
Join Date: Jan 2016
Posts: 65
8 yr Member
mskari85 mskari85 is offline
Junior Member
 
Join Date: Jan 2016
Posts: 65
8 yr Member
Default

Great information. Thank you David and all.

Joanna, I know it's not fun for anybody to be suffering from any of these issues, but I feel a little less alone knowing somebody else relatively "young" is having similar issues.

I had an MRI this morning to rule out MS. It was my very first MRI and I am a very anxious person, so of course I had a full blown panic attack when they put me in the machine and I had to be taken out twice. My mouth, face, and even teeth were tingling and buzzing during my panic attack, before they ever turned on the machine. Sure made me think about how a stress reaction contributes to nerves. Anyway, I did eventually get back in that tube and I made it through the entire scan. Growing up at age 30! hahaha
mskari85 is offline   Reply With QuoteReply With Quote
Old 07-13-2016, 03:38 PM #23
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

Very interesting discussion with lots of useful links - thanks everyone.

Just to throw in my 2 cents worth - I've been looking recently for scientific research on possible links between MTHFR gene mutations and prevalence of autoimmune disease, (specifically Fibromyalgia and/or Addison's Disease). This may have some relevance to the discussion of genetic influence and disregulation of the immune system. I know MTHFR has been discussed on other threads here on NT, so the link below may already be known.

Association study between methylenetetrahydrofolate reductase gene polymorphisms and Graves' disease. - PubMed - NCBI

While it's only an abstract, and it specifically discusses Graves Disease, it does say: "Previous studies have provided evidence that a high prevalence of MTHFR gene polymorphisms is frequently detected in patients with autoimmune disease, suggesting a novel genetic association with autoimmune disorders." (Interestingly this study's conclusion is that in the case of Graves Disease - MTHFR actually provides a protective effect in women.)

I've only just started looking so will post any further sites I come across later. There's plenty of anecdotal supposition online, (of the flog the book, treatment or supplement type), but finding definitive information is more elusive.

Would appreciate if anyone else who comes across anything connected could post a link. Thanks

Last edited by bluesfan; 07-13-2016 at 03:44 PM. Reason: grammar
bluesfan is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DavidHC (07-14-2016)
Old 07-13-2016, 07:15 PM #24
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

I can't find anything for Addison's Disease but this suggests an association between MTHFR and Fibromyalgia in a Turkish cohort Angiotensin converting enzyme and methylenetetrahydrofolate reductase gene variations in fibromyalgia syndrome. - PubMed - NCBI .
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (07-14-2016)
Old 07-13-2016, 08:17 PM #25
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

I'm chiming in late, but my basic Immune system uses biochemicals (probably cytokines, but not clear yet) to attack organs/systems of my body.

The first was my skin with severe eczema for the first 27 years of my life. And then it stopped.

Later it was my arteries, and the the inflammation caused Coronary Artery Disease.

Then my moisture glands were attacked, taking away my saliva and my tears.

Then my bladder was attacked, causing inflammation and bleeding of the lining (very painful).

And my hearing, with Meniere's and moderate deafness.

Then it was the nerves of my legs and feet, and now I have profound PN, atrophy of both legs, walk with braces ( and great difficulty)

The my lungs were diagnosed with small airway obstruction (a form of COPD).

My arms, hands, face, lips and tongue burn, itch tingle, and have stabbing pain: Small Fiber Neuropathy.

And I have Immune Deficiency (CVID) and must have transfusion of Immune Cells from donors, IgG, monthly, or I am subject to constant infections due to my lack of protection.

Our Immune system can use autoantibodies to attack and organ/system of our body. This is Lupus, Rheumatoid Arthritis, PN, over 100 conditions.

And in my case it uses some other mechanism is attack me. The result is the same, unfortunately.

Hugs, ElaineD
ElaineD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (07-14-2016)
Old 07-13-2016, 09:11 PM #26
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

Quote:
Originally Posted by ElaineD View Post
I'm chiming in late, but my basic Immune system uses biochemicals (probably cytokines, but not clear yet) to attack organs/systems of my body.

The first was my skin with severe eczema for the first 27 years of my life. And then it stopped.

Later it was my arteries, and the the inflammation caused Coronary Artery Disease.

Then my moisture glands were attacked, taking away my saliva and my tears.

Then my bladder was attacked, causing inflammation and bleeding of the lining (very painful).

And my hearing, with Meniere's and moderate deafness.

Then it was the nerves of my legs and feet, and now I have profound PN, atrophy of both legs, walk with braces ( and great difficulty)

The my lungs were diagnosed with small airway obstruction (a form of COPD).

My arms, hands, face, lips and tongue burn, itch tingle, and have stabbing pain: Small Fiber Neuropathy.

And I have Immune Deficiency (CVID) and must have transfusion of Immune Cells from donors, IgG, monthly, or I am subject to constant infections due to my lack of protection.

Our Immune system can use autoantibodies to attack and organ/system of our body. This is Lupus, Rheumatoid Arthritis, PN, over 100 conditions.

And in my case it uses some other mechanism is attack me. The result is the same, unfortunately.)

Hugs, ElaineD
Hi Elaine - are you familiar with MAI ? I was told by my primary care doc that a second c-scan of my lungs shows suspected inflammation (Mycobacterium Avium Intrace). I am 8 months into dealing with a severe axonal polyneuropathy and am scheduled for a nerve biopsy tomorrow. Now I'm wondering if there is a link between inflammation in lungs and painful axonal polyneuropathy.
rec60661 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ElaineD (07-14-2016)
Old 07-14-2016, 08:54 AM #27
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

No,rec60661, I haven't heard of MAI. There are so many marvelous and bizarre conditions in the world that I learn about every day on these forums.

I'm so sorry you have that infection. It often accompanies compromised Immune System, I read. Is your Immune System 'compromised'? Mine is because I have Immune Deficiency, a Primary Form. But I doubt if I have that infection, tho' I wouldn't know, I guess. The assumption is, I think, that my small airway obstruction is often associated with my form of CVID, but is not from infection.

Perhaps I should see a Pulmonologist for clear diagnosis of my compromised lung condition. But I've had several c-scans of my lungs, one recently. And what shows up is more like scaring and not inflammation.

I don't cough often, but I do have a sort of 'wheeze and whistle' sound if I expel my breath forcefully. And I have trouble taking a really full inhaled breath, if that makes any sense.

Since I have so many conditions I tend to ignore the ones that don't bother me terribly.

Thanks for your suggestion.

Hugs, Elaine
ElaineD is offline   Reply With QuoteReply With Quote
Old 07-14-2016, 11:14 AM #28
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
Default

Hi Joanna,

I'm glad to hear that. His work is very interesting and worth reading. Fasano is a conventional physician so unfortunately he doesn't focus on natural methods, so no diets or the like, but like most who know about autoimmunity, he does say no gluten for those dealing with an autoimmune disease. The diet for healing the gut or dealing with problems with intestinal permeability and so autoimmunity is pretty standard, since there's research indication what makes it worse and what better. You'll find numerous books and sites on the subject and you can find studies on PubMed. But they all pinpoint the same things to stay away from: grains, fairy, nightshades, nuts and seeds, alcohol, certain fats high in omega 6, etc. You can find good stuff that's based on research on the Paleo Mom's site, under autoimmune protocol, and the info is all there without needing to spend money and buy her book.



Quote:
Originally Posted by JoannaP79 View Post
Hi David,

The links are really interesting reads, thank you. I'm always interested when the articles aren't trying to flog a book or diet.
DavidHC is offline   Reply With QuoteReply With Quote
Old 07-14-2016, 11:19 AM #29
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
Default

That's interesting, Bluesfan. Thanks. The human body is so complex and interesting.

So here's a question for you or for MrsD. or any other takers, though I'm sure it has been answered somewhere already and perhaps I've asked it myself: What is the fallout, if one does have MTHFR mutation? I haven't been tested and likely won't be tested or would prefer not to spend the time and money for testing. Is it simply that one can't process folate and B12? If so, I can just keep taking those as I've been doing over the last year. For what it's worth, I don't think I have the mutation as there's no evidence of it in my family.

Thanks in advance.


Quote:
Originally Posted by bluesfan View Post
Very interesting discussion with lots of useful links - thanks everyone.

Just to throw in my 2 cents worth - I've been looking recently for scientific research on possible links between MTHFR gene mutations and prevalence of autoimmune disease, (specifically Fibromyalgia and/or Addison's Disease). This may have some relevance to the discussion of genetic influence and disregulation of the immune system. I know MTHFR has been discussed on other threads here on NT, so the link below may already be known.

Association study between methylenetetrahydrofolate reductase gene polymorphisms and Graves' disease. - PubMed - NCBI

While it's only an abstract, and it specifically discusses Graves Disease, it does say: "Previous studies have provided evidence that a high prevalence of MTHFR gene polymorphisms is frequently detected in patients with autoimmune disease, suggesting a novel genetic association with autoimmune disorders." (Interestingly this study's conclusion is that in the case of Graves Disease - MTHFR actually provides a protective effect in women.)

I've only just started looking so will post any further sites I come across later. There's plenty of anecdotal supposition online, (of the flog the book, treatment or supplement type), but finding definitive information is more elusive.

Would appreciate if anyone else who comes across anything connected could post a link. Thanks
DavidHC is offline   Reply With QuoteReply With Quote
Old 07-14-2016, 11:22 AM #30
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

While it may not be possible to stop autoimmune processes, we might be able to reduce them some. And also with supplements we may be able to repair better. Cleaning up the diet will provide more nutrients for repair also and reduce inflammation.

I just read a thing on Yahoo about this:

FREE Shows, Health Reports & More | Natural Health 365

why fast food is not good for you or me.
__________________
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:
bluesfan (07-14-2016), kiwi33 (07-15-2016)
Reply

Tags
autoimmune, disease, explain, positive, understand


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
Could RSD be an autoimmune disease? Imahotep Reflex Sympathetic Dystrophy (RSD and CRPS) 19 05-15-2013 07:41 AM
**autoimmune disease! strizzlow20 Multiple Sclerosis 1 05-07-2013 12:19 AM
autoimmune disease paula_w Parkinson's Disease 12 02-16-2012 11:42 AM
If MS is an autoimmune disease... Riverwild Multiple Sclerosis 13 04-22-2009 11:10 PM
yet another autoimmune disease jnewk Multiple Sclerosis 3 11-18-2006 10:22 AM


All times are GMT -5. The time now is 12:44 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.