They tell me my PN is related to the fact I have some kind of AutoImmune Disease, so I am with you.

Hello , I to am a victim of autoimmune with neuropathy involvement..sero negative Sjogrens is my diagnosis for today anyway.....sigh. We are together in the same boat and I am ready to just scream from frustration. Nice to meet all of you on here cause it helps to not feel alone with this stuff. Mary

I have been diagnosed with peripheral neuropathy, osteroarthitis, Autoimmune Inner Ear Disease, Meniere's and a blood disorder HTLV II. There's more but that's enough for now. I found out about my blood disorder while givng blood during a blood drive at work in 1987. since then I have been diagnosed with a number of autoimmune syndromes/diseases. I believe there is a connection between all or at least most of them.

I have asked my PCP for a referral to see a rheumatologist, we'll see what happens with that. I'm housebound and have been for a few years. Oh, I can go to the store and doctor's appointments but much more than that causes great anxiety. If I need to go more than a few miles, I have to ahve someone drive me. If not, I go into a panic attack and that's not a good place to be when you're out in the middle of nowhere trying to get somewhere.

Anyway, I was hoping to find people of like problems to talk with about them. The symptoms what process they did to find out for sure what those symptoms lead to etc... I'm seeing some real interesting stuff here and will probably stay on for a bit to find out more.

I'd really like to find anyone who has the blood disorder HTLV II. If you do, please let me know so that I won't feel so alone with this thing.

Yes, I have an auto immune disease, alopecia universalis. Got it at 29, and am now almost 60. Lots of other auto immune problems since. I believe there is a connection, and Mayo clinic told me as much. The problems I have had, have been continuing all my life. Auto immune deficiency in my case. Not HIV, just a weakened immune system where I pick up any and everything virus wise, and have arthritis, DJD, DDD, ATTD disorder in my ankles. My thyroid was biopsied friday, two spinal fussions. This all is related, I know it in my bones so to speak. Ginnie we should all talk about this element, as I know for sure I am not alone in this

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Autoimmune deficiency usually means that your antibodies are depleted from fighting disease, not that you aren't making enough antibodies.

Have you heard of treating autoimmune disease with low-dose naltrexone?

http://www.lowdosenaltrexone.org/

Naltrexone is an morphine blocking drug. In the 1980s a New York doctor tried it on autoimmune disease, and it showed promise. Now low doses taken once nightly are showing effectiveness.

The same treatment is being used against some cancers.

http://fourfoldhealing.com/2010/06/1...ach-to-cancer/

Why do you suppose a drug which blocks opioid receptors is effective against autoimmune diseases?
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Hello to all. I am wanting a little more information on naltrexone. I have a host of less severe auto- immune diseases, gerds, alopecia universalis, degenerative joint disease, cervical disease, and arthritis that bites. I played with murcury as a child also, and have often wondered if this happened to me because of that childs curiosity. Thillieum in the ground water was another mystery stab at it from the mayo clinic. Would this drug do any thing to help my immune system? I know for sure I have a T and B lymphosyte imbalance. Apparently I have necessary immune responce, but in my case, they are mis-directed. This was an explaination given to me during the course of the last three decades. I participated in trials in my 20's with DNCB a sensitizing agent that gives the immune system a kick start with the alopecia. What is Naltrexone. Sorry all of you have such troubles too in this life. Any information I get I appreciate as I seem to be falling apart. I will pray for all of you too. ginnie sorry for medical miss-spellings ginnie

The immune system operates using leukocytes which sample element sequences of the proteins displayed by antigens. These leukocytes communicate these sequences to the thymus and spleen. The thymus and spleen create and mature new leukocytes programmed specifically to recognize the sampled antigens. These leukocytes kill and devour the antigens and the tissue which has been compromised by the antigens ....extremely exacting.

The entire process is controlled by nerves. Nerves are controlled by endorphins, the body's own pain killing narcotics. Some of the foods we eat contain endorphin mimetic proteins .....opioid exorphins. These proteins plug into nerves at inappropriate times. They cause nerves and organs to stop performing, or to perform inappropriately. When this happens in thymus and spleen nerves, it degrades immune function. The immune system is forced to dumb itself down. In dumbed-down mode the immune system ceases to discriminate between antigens, and ceases to discriminate between antigens and human tissue. The result is autoimmune disease.

Naltrexone is a drug which blocks nerve endorphin receptors. It was developed to reverse the ill effects of heroin addicts who overdose. Reportedly, after a few hours, naltrexone makes these people feel HORRIBLE. That's because it blocks both heroin and endorphin. And people require endorphin. Naltrexone's inventor got the idea of using Naltrexone on people with autoimmune diseases. It worked, but made them feel awful. Subsequently other doctors experimented with low doses of Naltrexone, taken nightly. Reportedly, it works like a charm.

Another possible drug to look into is clofazimine. Leukocytes communicate the above immune processes with thymus and spleen nerves using kv1.3 potassium ion channels. When ingested opioids make control nerves sluggish, they degrade the function of these potassium channels. Clofazimine restores potassium channel function. Clofazimine has a side effect which many people don't like. It discolors the skin .....to different degrees, and in different tones, depending on the patient.

‘Course instead of attempting to cure the problems caused by ingested exorphins you could just stop ingesting them.
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Hi,

I'm a sero-negative Sjogren's whose first major symptom was small fiber neuropathy, non-length dependent, that was diagnosed by neurologists via skin punch biopsy right away because my skin was "on fire." That's gotten a lot better, but still have skin discomfort and am now completely photosensitive.

Have the dry eyes, mouth, nasal passages, airway, skin.

My neuros all have said that small fiber neuropathy is "huge" in people with Sjogren's. So the community is aware of the connection, but as there is no cure for Sjogren's, the neuropathy is only treated symptomatically with anti-depressants and anti-seizure meds. Sometimes chemo drugs are used. I'm afraid of all of them because of the side-effects.

However, I believe my neuropathy improvement is due to taking specific vitamin supplements (not herbal anything). B12 as methylcobalamin, CoQ10,
R-alpha lipoic acid (not "S"), B1 as benfotiamine. Taking too much B6 can cause toxicity, so I stay with a good multi-vitamin/mineral one a day formula.
Oh yeah, and the fish oil/Omega-3 the rheumatologists prescribed.

Lily

I'll chime in here, too. Wish there was a cure for all of us, or that someone could trace all of these conditions to one cause.

I have classic RA, secondary Sjogren's and Raynauds, motor nerve neuropathy, and now RLS. My motor nerve problem was diagnosed two years ago when suddenly I couldn't walk. EMG showed breaks in the pathway near my knees and ankles, and continuing problems back to my spine. Not diabetic, so it must be idiopathic or somehow traced to RA or the RA biologic drug I take.

My latest problem is an atypical case of restless leg syndrome, where I have little knots crawling around in my calves at night, which eventually turn into horrible nocturnal leg cramps.

I'm on my second day of Mirapex, and hoping for a miracle.

Gramma

Hello, Lily. I also have peripheral neuropathy related to Sjogren's - about 4 years. I have tingling in arms and legs as well as pains that some and go all over my body. I'm very interested in your supplementation regimen. Just recently I've discovered that B-12 seems to stop some of my pain and weird numbness sensations. But it think I'm needing a crazy amount like 2000 mcg at least daily. I've tried the benfotiamine a couple of years ago and still have some, so I'm thinking of trying that again. Will you please give specifics on your dosages and some of the your logic and experience with these supplements. I would be so so grateful for your sharing!

Thanks so much, Michelle