Nambudripad Allergy Elimination Technique

See http://www.naet.com/subscribers/what.html for explanation of NAET

I appreciate each response, very much! Since I've posted, the pain has not let up a bit!
I've had PN for six years. It began following heart surgery for afib. Afib followed Graves Disease. Heart meds gave me Lupus. I'm well now except for this PN. All tests point to Small Fiber Idiopathic. I've had three Neurologists. Quit the first after becoming tired of listening to all of his problems and all he wanted to do was give me more pills. The second was fine. Although after he gave me Cymbalta and it had severe side effects, he tried Lyrica, and when it failed (causing worse pain), he just told me to keep on Neurontin and do the best I can and pretty much seemed to push me off to the side.
So, going hunting for answers myself, I found this place. I read all the time, and get comfort knowing I'm not alone - though I hate others must suffer too from this horrible stuff. Family does not understand the agony of the pain. I grin and bear it best I can.
Lately, it has been almost too much.
I fell in the street (walking) in February. I had to have knee surgery in April, and am still recovering. I have swelling in my knee and leg, but it is getting better now. It has been a long healing process and will take up to a year I am told. I fell because of the PN making me so clumsy. I am grateful though that it is getting better, even if slowly.
I decided to try the acupucture and NAET when hearing about it from where I was getting physical therapy for my knee.
I have not been back since I last posted to you. I agree now, that it is not for me. I don't know if it caused my PN to worsen, or the summer heat, or the stress of knee recovering or what. But, the PN pain is still UP over what it was before the acupucture and NAET. I did read the article Billye mentioned, and would have to agree that NAET is questionable. But, for some reason my PN is so awful now I am not doing well. I've been very depressed. It has been hard to talk about anymore. I'm just too tired of the pain.
I see my heart doctor tomorrow for a check up, and will discuss the problem with her. I will see if I can get in to see my neurologist before Friday also. I just feel I won't get anymore answers than before. The drugs I can take are limited since I seem to have adverse reaction from so many.
I will take Billye advise and request blood tests. I do take B12, LCarnitine, and ALA. I once thought they were helping, but now nothing seems to help.
I'm sorry I sound like a cry baby. It has been really rough lately. Thank you for being here.
Carrie

Carrie,
Your poor body has been thru a lot! No wonder you are feeling the way you do. It sounds as if you have autoimmune small fiber neuropathy. Has anyone suggested IVIG to you? Also, see www.lizajane.org It has a lists of tests that can be done and it would be good to know what tests you have had done.

I really hate to say this and please folks jump in and correct me if I'm wrong. But doesn't autoimmune thyroid disease and Lupus cause neuropathy? If I am right, then there is not much sense in doing any more testing. It is just more money spent when you already know what is causing the neuropathy. Please please correct me if I'm wrong.

Autoimmune neuropathy can be treated with IVIG. Here is a quick explaination of IVIG: http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

Also, you might want to see a good pain control specialist. Hope all of this helps.

Billye

--autoimmune thyroid disease is certainly a candidate for neuropathy cause, as is lupus (and any autoimmune vascular/connective tissue disease).

Thyroiditis tends to produce neuropathy that is sensory, but more commonly affects the larger, myelinated fibers (more parasthetic than painful, usually).
The most common presentation with lupus is one of mutliple mononeuropathies, but the neuropathy there can be more diffuse, and affect fibers of various sizes.

Anyone with multiple health issues probably faces a long road to diagnose what might be causing neuropathy secondary to those issues (if it can be determined at all). It might be more useful to determine which nerves are being affected and in what ways to help plan what sort of immune modulation therapy might work best.

I can't believe this! You just said more to me that makes sense than years of dealing with doctors. I've always wondered why the doctors would not connect my thyroid disease with the neuropathy. They just tell me 'small fiber idiopathic neuropathy.'
I pulled some old records and found I was tested in 2005 by my neurologist for Sjogrens Antibodies (in range), and another test for Hu Immunoreactivity (negative). Since then, nothing more. So, do I ask for more tests? I have to do something. I feel like I'm really losing ground now.

I did see the heart doctor today. She ordered bilateral lower extremety doppler for Friday. My legs hurt so much to walk now. This is aching, heavy, cramping pains -- in addition to the increased PN pain. Both legs were swollen today(but the leg with knee surgery still 5" bigger round than other one) - Edema she says, and she says the pain can be from another something, not vascular, but that we need to see. I guess I do have multiple health issues.

I'm apologize. I'm really not trying to whine. I read so much here, from others, who have it far worse than me. I am so grateful to you all. Just to have a place to come and sit awhile and know I'm not alone. I will look at lizajane.org now and the information about IVIG (which I know nothing about).

I'm open to any other thoughts or ideas!

You're all in my prayers,
Carrie